Dr. Fields

Dr. Fields is the doctor that probably makes me laugh the most, but his sense of humor is the type that makes you wonder if he actually knows he is being funny. The point is, he cracks me up. Here's a few conversations we had today at my five minute appointment:

Dr. Fields: Have you seen Dr. Pou lately?

Me: No, I was supposed to have an appointment with her last Wednesday but she canceled on me.

Dr. Fields: (in a monotone voice) Dreadful. Surgeons will do that to you.

Me: Yeah, I see her this Wednesday

Dr. Fields: I haven't ever canceled an appointment on you have I? (he has this thing about always wanting to be better than Dr. Pou, he was quite proud when I told him that he is better at scoping my nose).

Me: No, you just had surgery and missed a few weeks of my treatment.

Dr. Fields: That's okay, I did all the planning.

A few minutes or so later:

Dr. Fields: How's your swallowing?

Me: Fine, I had pizza for lunch if that is any indication.

Dr. Fields: Yeah, I guess if you can get that down, you can get anything down. Where did you get pizza from?

Me: It was frozen pizza, Dijourno has a new one with fire roasted vegetables.

Dr. Fields: That's good because there's no where around here that has good pizza like they do in New Jersey. (I then told him about Brooklyn Pizza and about my dad's pickiness with pizza, those crazy New Jersey boys!).

A few minutes or so later:

Dr. Fields: Well, clinically you look good.

Me: Have you talked to Dr. Bienvenu about the whole dysautonomia thing? (I then tell him all about seeing the endocrinologist)

Dr. Fields: (out of nowhere) Are you pregnant?

Me: No 

Dr. Fields: Okay, it was good seeing you, see you at the end of the month.

Okay, end of stories. As you can tell, there is never a dull moment during my appointments with Dr. Fields. I always come out laughing because of some of the things he says and the way he says them, but you don't realize they are funny until later on. Oh good times. 

Not My Blood Sugar

Tilt Table Test Here I Come!!! 

Yep, it's probably dysautonomia. Go google it, I know I had to! Haha. 

Ruekie And The Sunshine

This is how Rukie has been spending his free time since I bought the baby gate. Since the weather has been nice I keep the door open and I put up the gate and he just lays in the sun the whole time.  

He doesn't really go out in the evenings once the sun is gone, unless he and Edgar are harassing the neighbors.

Ruekie used to lay out on our back porch at our apartment in Siloam and would spend his whole afternoon sunbathing. Edgar, however, wants nothing to do with the sunshine. Usually he just hangs out in the doorway on the tile - has has too much dark hair to really enjoy the sun I guess. 

In other news, so far my blood sugar levels have been, get this...ABSOLUTELY normal. Yep. I took it yesterday when I felt bad - normal. I took it this morning an hour after waking up and not eating since dinner at 6:30 the night before - normal. I took it this afternoon two hours after I ate lunch and was feeling bad - normal. Yep, so I'm pretty sure the doctor was right and it is not my blood sugar! Woohoo...tilt table test here I come! I'm going to keep testing my sugar over the weekend but I'm not expecting anything to change - but hey! At least something about me is normal, right???

Some Answers...Kind Of!

Today was my appointment with the endocrinologist and I actually got pointed in some sort of direction as to my recent health problems! Basically I am testing my blood sugar over the weekend whenever I feel really hungry and light headed (I'm supposed to push it and feel really bad when I test). I have to call the doctor early next week and let him know what my levels were. I took a test this afternoon when I got home from the doctor and I was HUNGRY and light headed of course and it was 88, so normal. Which brings me to the next point. The doctor does not think it is my blood sugar at all that is causing the problems. He thinks it is a nonautimmune disorder - say that three times fast, I know I can't. So yep, leave it to me to be the one that gets the weird diseases. Basically what he thinks is happening is that my pulse and my blood sugar are going whacko and he thinks it's because of my neck dissection - you fix one thing and mess up another, right? Awesome! When he took my pulse while I was sitting up it was 120 and when he took it with me laying down it was 89-92...that's a BIG difference! He didn't take it with me standing up because he just assumed it would be insane. So, we are ruling out blood sugar this weekend and if it turns out to be the problem, we'll go that route, but if not, I have to do some sort of tilt table test. Sounds fun I guess - pricking my finger, however, is not! Actually I just looked at some pictures and it totally looks like an awesome test! Haha. So if it turns out to be that nonautoimmune nonsense, I would have to either take medicine to control the problem, or there is a chance that it could fix itself. 

My endocrinologist called Dr. Bienvenu during my appointment to let him know what he thought was the problem and I think Dr. Bienvenu feels bad for me. Apparently on the phone he was like, we put her through so much and she never complains! That comment comes in contrast to what my physical therapists say! Ha. I like to make them earn their money so every time my weights get increased I complain - just for fun - because they try to do it without telling me to see if I notice (I do). I don't want them to not increase my weights or anything and I will do the exercises I just like to make their jobs difficult! I mean, it's hard to hold two nine pound weights and do semi-reclining bench presses with them. I have a face to protect! 

Oh, and in case there was any confusion with the last post...I LOVE football. We will just have to plan our canasta games around the football game! 

Oh, one more thing, Congrats to Vicki for finishing her chemo today!!!! Hope the sick days subside quickly and you can start enjoying the good days!!!! 

Let's Play Stump The Medical Oncologist

Today Warner and I, mostly just me though (does that make grammatical sense? I don't think it does but let's just pretend, okay?), okay, as I was saying, we played stump the medical oncologist! Basically this consisted of me listing off all my recent symptoms, extreme hunger when I don't eat every two hours or sometimes less, light headed-ness when I get extremely hungry, and then not feeling good at all when I get extremely hungry. Basically my symptoms don't fit together. He said my blood sugar looked fine from my blood work this morning as did everything else (blood pressure and such). If it was just my blood sugar I shouldn't really be getting extremely hungry, if it's an under-active thyroid (which can happen from radiation) I should be gaining weight and not be getting hungry, and an over active thyroid does not really fit because the radiation is more likely to knock my thyroid out rather than increase it's efficiency. So, I'm going to add another specialist to my already super long list. I get to go see an Endocrinologist at some point in the near future! Haha, I just want to know what is going on because this hungry / light-headed nonsense is out of control. I have never been more hungry in my life!!!! So there you have it. You are completely up to date on my health issues! 

Oh, about the Auburn trip: we are really wanting to go in October. Warner has a shutdown at work the week before (technically the 6th - 11th) so we are going to have to play it by ear as to whether or not we will make it. Right now we are planning on going but there is always a chance that we will not make it there because of work. Sorry I don't have a more definite answer, maybe Warner will be able to give you all some insight. 

I bought a baby gate for the dogs today. That way I can put it on our porch and let them lay out in the sun! Ruekie has been taking full advantage and has been laying in the sun since I put it up. I guess we really bought it so that we could put it in our bedroom doorway to keep Edgar from wandering around at night (it gets to hot in the bedroom if you close the door and both dogs sleep later if they are not in their kennels at night). 

We should talk football for a moment. The Razorbacks are making me very sad, but enough about them, I can't bear to talk about it. The other team that is making me sad...the Saints!!! They have come so close the past two weeks, only to lose!! They are breaking my heart! I mean come on, win one for me! I had cancer! Seriously!!! Haha, I'm not really that heartbroken over it all, but I do like to see the Razorbacks win and I don't think it's going to happen for a while (we play Texas, Florida, and Auburn right in a row and they are all ranked). Okay, I'll stop talking about football because I really don't know that much about it! 

Have a good afternoon! 

No Tube + No Tape + Rice Krispie Treats = Happiness

Well, there it is, the lasting reminder of my feeding tube. You can click on it and enlarge it and see it better if you feel the need! It looks just like my belly button, except for it being all red and stuff and it is slightly longer, and it is perpendicular to my belly button. You can see how red my stomach was from the tape that was on there. Also, if you look back at the picture of me with the feeding tube still in from the other day you can see how my stomach was swollen around it - it still is a little bit but not nearly as bad as it was. 

In other news, Edgar is going back to the vet on Monday because they forgot to do half the surgery. They neutered him but they forgot to fix his hernia. I am definitely not a happy camper, but they said they would not charge us for the anesthesia. Whatever, it basically just means I have to keep him calm longer so he doesn't bust his stitches. Woohoo! 

Here is a little conversation that Warner and I had the other night. 

Me: What is the air set on, I'm cold.

Warner: I never touched it.

Me: Okay, I'm still cold (I was trying to get him up to go adjust it)

Warner: We can make spooky cookies!

Me: What?!?!

Warner: Cookies, for the dogs... spooky cookies

Me: Are you awake?

Warner: Yeah (he was very confused at this point)

Me: Fine, then what was I talking about

Warner: Spooky cookies

Me: No, the air conditioner, I'm cold. What are spooky cookies???

We were laughing too hard at this point and the air conditioner never got adjusted. Warner is notorious for talking in his sleep, or falling asleep in the middle of conversations at night and he says some of the CRAZIEST things! I call it his brain tumor. My favorite conversation was a few weeks ago and he was praying and prayed for the moat around Paula's castle. Then a few nights ago we had this conversation:

Warner: (he was praying).....And make Paula smarter than she appears

Me: Did you just call my best friend dumb?

Warner: Huh??

Me: You totally just called my best friend dumb! 

Warner: *realizing what he had said* Aww...now Paula's dumb because I prayed her that way!

Haha. Paula is not dumb. She's actually quite smart and not just because she's in grad school (I mean I'm not in grad school and I'm definitely one the smartest people in the whole world...stop laughing at me!). She's pretty much only smart because she's my best friend and that's the number one requirement to be my best friend (HA!). 

Okay, back to cancer since that's what you guys want to hear about right? I have an appointment with Dr. Bienvenu on Wednesday, just for a check up and blood work so no big deal. Hopefully we will be able to find out then when my PET scan will be (sometime in October). I was supposed to have an appointment with Dr. Pou that day as well but it got pushed back a week. And that's it in the cancer world. 

I ate a rice krispie treat today and it was quite tasty. OOOOH! And pumpkin spice lattes are back at Starbucks and I LOVE them! My bottom front teeth are really sensitive today. Not to hot or cold, but it still feels like it so I'm taking ibuprofen to keep from going insane (and I bought some sensitive toothpaste). I think it might be that the tip of my tongue is irritated (it's red today). So I'm hoping the problem fixes itself soon! I'm feeling a good bit better today too, On Wednesday and Thursday I was really light headed and dizzy and I had a slight fever. My appetite was really low too which didn't help the problem. The good news is that I'm feeling better this afternoon, the bad news is, the dishes PILED up over the past couple of days and it is going to take me a year to get them all washed! 

I'll try and convince Warner to post an update on his life here soon. 

Edgar Is Back!

 

Edgar is back!!!

And he is being so ridiculously sweet. I went and picked him up from the vet this morning and he was so excited to see Ruekie. He whined and carried on for quite a while after he saw us. Oh and let's talk about how the horse weighs 70 pounds!!! He's only 5 months old! He's going to be massive. 

I woke up this morning with every intention of taking a picture of the hole in my stomach, so I took a shower to loosen up the tape and then I took the bandage off, and the HOLE WAS CLOSED! CLOSED!!!!!! AGH!!! I was so disappointed. This picture was taken the last time I was "flushing" my feeding tube, the night before I had it taken out. After the picture was taken I shot the water that was in the syringe at Warner...it was pretty awesome. I'll post a picture of my second belly button soon, it's not all that exciting since it's ALREADY CLOSED!

That little guy was on my amaryllis plant yesterday morning 

when we got back from the hospital. He was teeny tiny!

Since I posted a picture of Edgar, here's one of Ruekie.

No More Tubes!

Here's a stat for you:

I have not, not had tape on some part of my body since May 19th. That was almost 4 months ago! We were on our way to the hospital this morning to get my feeding tube removed and for a moment I got really excited because I was thinking that once I got my tube removed I would no longer have any tape on my body (I kept it taped to my stomach all the time) WRONG! I immediately realized I would have a big ol bandage over my little hole in my belly! It is, however, the first time I have been tube free since May 19th and that's pretty exciting!

Okay, now story time! We were a little late getting to the hospital because of a wreck on I-10 and a stalled car a little further down. We made it though and we checked in. They called us back to the pre-op area where they take your stats and all. Then the nurse tells me to put on the gown. Okay, so if you've paid attention at all, you know that I think they are making a huge deal out of the whole procedure and I think they are nuts, and I've told them so, more or less. So I asked the nurse what all I had to take off. She replied, "Everything but your underwear." This did not bode well with me, I was going to have to sit on the table with my gown lifted up so he could pull the tube out of my belly, wearing nothing but my underwear, and there were no drugs involved this time. So I threw a small fit and explained to the nurse what I was having done but she insisted I put on the gown. I made faces at the curtain when she left, yes, I'm three. So, the guy comes to transport me and another nurse comes and tells me that everything I went through was unnecessary because I'm an "outpatient." Duh, I tried to tell them that. So I asked if I could put my clothes back on, and I did so. They tried to get me a wheel chair but I insisted I could walk. Then they brought me back out to the waiting room where I started because no one knew where "outpatient radiology" was. The problem was, no one told my doctor where I was, so he was looking all over for me. He came out in the waiting room, and I thought I recognized him (I was extremely drugged last time I met him and was still in ICU, but his voice sounded really familiar) but he went right back in the back area. When he came out again he looked confused and was talking to someone in the admissions area, so I asked him if he was looking for me, and of course he was. I told him they had been running me all over the place and were making a big deal about the whole thing. He told me removing the tube would take like 2 seconds (and it did) and that some people even take their own tubes out! I told him I really would have done that if I could have gotten on the phone and had him tell me how to deflate the balloon. He laid a sheet down on the table and stacked up three folded sheets as a pillow and told me to lay down. He then deflated the balloon and pulled the thing out. Totally didn't hurt at all, he asked me if it did, and I said, definitely not, and told him it was so much better than having tubes pulled out of your neck. I told him after about how the admissions people were telling me that I would have had to have an IV in case they needed anesthesia - this made him laugh and he said that was completely unnecessary, I said I agree, I wasn't put under when it was put in, so why would they do it now! I wanted to ask him if it was necessary for me to skip breakfast but I figured I would not have been happy if I found out that I could have eaten because I was STARVING, so I didn't ask! We got Whataburger on our way home. 

So, the tube is gone and I have no restrictions. It just feels kind of like a slightly pulled muscle and it itches (but I think that is because of the tape!). We are going out to Cheesecake Bistro tonight to celebrate. Tomorrow I will go pick Edgar up from the vet where he is getting fixed and having a hernia removed! Poor puppy! I think Ruekie enjoys the peace and quiet because he has been calm all day! Well, that's all!

Tomorrow!

At this point tomorrow I will be tube-less for the first time since May 19th, when I had the three drainage tubes in my neck and my trach. My feeding tube was put in my stomach a few days later although I don't know really when because I was quite drugged up - I had a naso. tube before that and man was that uncomfortable! So, tomorrow I will bid my feeding tube good riddance and be done with it! 

I've gotten to the point where I am eating well enough that I can actually look at recipes and plan out meals to eat during the week. When I was on the feeding tube and not eating by mouth at all, except for maybe a few spoonfuls of soup or some baby food (both of which I have no desire what.so.ever. to eat any time soon), it drove me insane when people would talk about food. Another problem I had was right after I stopped using the feeding tube absolutely nothing sounded good. It's not that food tasted bad I just hadn't had it in so long that I sort of stopped craving things (not so anymore though, I eat like crazy!). Also I had those ulcers that would pop up and be painful so that ruined the whole eating experience - it was more work than it was enjoyable (they are going away now for the most part, I only get them occasionally and they don't hurt nearly as bad). Last week was the first time since May that I actually pulled out a few recipes to make for dinners (we mostly ate out while we were in Tulsa, okay we really just only ate out while we were in Tulsa. I had to put on weight okay???). I would eat frozen meals or meals that didn't require much thought (I would go to the store without a shopping list and basically buy whatever I thought looked good), I did make fish one night a couple of weeks ago, but I just made that recipe up, so it doesn't count! So this week I am trying a new lasagna recipe (because Warner really likes lasagna and I don't make it very often) and I also found a shepherd's pie recipe that looked really good so I might attempt that as well. 

Warner and I made it out to church this morning in Luling. It was fun to see everyone! I made soup for dinner at my parents house for me, Warner, and my brother (my parents are in Yellowstone!) on Saturday night. We spent Saturday evening over at Dawn's house hanging out with her and the kiddos and ate some cake (I haven't really had much cake since my surgery so it was really good!). This morning at church Dawn told me about this conversation that she had with her son Mason, who apparently likes me, but hardly ever talks to me and gets really shy around me (he's 4 right? or almost 4?). So anyway, the following took place during the "Say Hello To Someone" portion of the service:

Mason: Mom, there's Stephanie!

Dawn: Yeah, that is Stephanie, go say hi to her.

Mason: No, tell her to come say hi to me!

Dawn: No...you go say hi to her.

Mason: No, that's okay, I saw her last night!

Too cute! I used to babysit his older sister, Molly, when she was just a baby and she is now a whopping six years old! Dawn also is the one who took Paula and I to Maine for our senior trip in High School. So we go way back (ha!). 

Well, that's all I've got for now! I gotta go load myself up with more food tonight since they aren't letting me eat breakfast! If they try and keep me too long after, someone may end up with a black-eye, okay, or they may just get to see me cry because I'm so hungry. The two are comparable outcomes. Haha. Goodnight.

I'm Going Swimming Soon

Woohoo, Sharon finally called. I'm getting my tube out on Monday at 10:30 am. I have to be at the hospital at 8:30 and I can't have anything to eat after midnight. I'm going to die of starvation...seriously. I usually wake up around 8 in the morning and I.AM.STARVING. Then I eat again around 9:30 and then I have lunch at 11. We won't go into the schedule for the rest of the day. Everything I've read online says that the doctors usually pull the tube out in their offices, but apparently I can't do things like everyone else. I'm actually having to go to the OR for mine (I had a radiologist put mine in and not a gastroenterologist so that may be why). Hopefully it will just be an in and out type thing and I'll be able to go eat right after (they didn't put me under to put it in, so I seriously doubt they would to take it out). Oh well. The good news is that it is coming out finally and I'll be able to go swimming once the hole closes up! 

Just Waiting...

Quick Update:

We are waiting to hear from Sharon, one of Dr. Pou's nurses about when my appointment with the GI doctor to have my LAST tube removed will be. They were having trouble figuring out who the doctor was that put the PEG tube in and by the time they figured it out, everyone had left from the office. So, they are supposed to call this morning and schedule an appointment for me. So, I am just waiting to find out when it will be. Well, it's almost time for first lunch (yep, I eat a million times a day it seems like). I'll write more later. 

"Next Time We Evacuate I'm Bringing My XBox" - Warner

So Warner decided he didn't like getting stuck doing work around the house during our vacation. After the entertainment center was built and the room was painted, he proclaimed, "Next time we evacuate I'm bringing my xbox so I don't have to do all this again." I guess it's a good thing I got him to do a few things this time because it looks like I won't be able to do anything next time we are there (unless we "accidentally" forget the xbox). 

I had my appointment with Dr. Fields today and it was a good appointment, of course. All the nurses were amazed at how well I looked as was Dr. Fields (although he expresses things differently than all the nurses do). I got scoped, as usual, but Dr. Fields isn't so bad when he does it - it barely hurts, you just have to blow your nose for a little while after to get all the lubricating stuff out. He also said I was talking really well and he didn't make any comments about my weight (I'm still a few pounds down from when I finished treatment, but I haven't lost any since Mell weighed me two weeks ago - apparently I'm the only one on this planet that can eat out for lunch and dinner every day for a week and a half and NOT gain any weight). I also asked him about getting my feeding tube taken out because I haven't used it in a little over 3 weeks. He was amazed that I haven't used it at all and said to go ahead and have it pulled. So, after my appointment we immediately called Dr. Pou's office so she could get an appointment with the GI doctor set up, but they haven't called us back yet (Monday is her day in surgery, so I'm guessing she wanted to call Dr. Fields before she set up my appointment or she just wanted to wait until tomorrow to deal with it). So, I'm hoping the nurse calls tomorrow and we can get the ball rolling on this. 

That's all I've got for now. My parents are living it up in Yellowstone right now, and even though I'm not a big fan of Yellowstone, the Tetons are really close by (Lake Solitude anyone?), and it's not that long of a drive to Glacier (just the whole state of Montana pretty much) and I would definitely rather be in Glacier right now. 

Blue Room...You Saw Me Standing Alone...

Ha, okay, sorry, no more singing made up lyrics to country songs. We are back in Gonzales. We made it back this evening and it really isn't as bad here as I was expecting. West Baton Rouge had some intense tree damage but for the most part, Gonzales just looks like places normally do after a hurricane...lots of branches down along with a few trees and there are some blue roofs as well, but not that many. I went to the grocery store and it was pretty bare so I had to pick and choose what I could to make some meals. I didn't buy too much though because we are watching Ike, and if we have to evacuate I don't want to have to mess with cleaning out the fridge before we go. The grocery store was pretty busy as well, when I pulled up there was a line outside (it had cleared up by the time I got to the door) and when I left there was a line that had formed again - they were only letting so many people in at a time. 

I looked at the pictures I posted of my tongue, and I realized why everyone was so confused by them...I took them with my computer and for some reason, the pictures reversed themselves. My flap is actually on the right side (but it looks like my left in the picture) and the scar is on my left arm (although it looks like my right). Does that clear things up a little? 

Tomorrow I have a doctor's appointment with Dr. Fields and I'm going to beg and cry to have my feeding tube taken out! I'll let you know how it goes. 

Okay, now some pictures of everything we did in Tulsa! 

Our blue bedroom...

The entertainment stand that Warner and Todd built

The entertainment stand and the messy living room. I had to take everything off the old gigantic entertainment stand so next trip up I will have to find somewhere to put everything. You can see Ruekie in the bottom right of the picture...

Jackson and Girlfriend!

Shauna and Todd, Jackson's parents if you couldn't see the resemblance. They are also the wonderful people that are keeping an eye on our house while we are gone and our cookout buddies when we are in town.

Jackson! This is after we promised him a cookie. 

Woo Pig Sooie...More Proof That I Actually Graduated!

On Sunday we went to the University of Arkansas after church. We ate lunch with a group of friends from Cabot that we haven't seen for a while. Then at the U of A we went and saw my name in the Senior Walk! Woohoo...here are some pictures!

These kids went to lunch with us 

and walked around campus after with us.

On campus

Me by my name in the walk!

Again by my name!

They spelled it right!

I Am Stealing Shauna and Todd's Internet

Lainie is the recipient of the "Best Double Take Award" on Sunday at church. We were all standing around talking to Chris and Marie and a few other people and Lainie walked in and just looked at us and walked on by. Marie made some sort of comment and Lainie gave a quick response and kept walking. THEN, she finally realized, after looking at us a few times, that she hadn't seen us in a long time and that was kind of a big deal. We got a lot of double takes on Sunday. It's great. People just say hi like it's no big deal and then it clicks and you get a really excited HI! It was really good to see everyone and we enjoyed getting to spend time catching up with you all! 

Warner has finished the entertainment center, with the help of Todd from down the street. It turned out really well and we will move it into the house tomorrow. Today Warner and I went to the aquarium because I was starting to fall asleep on the couch while we were watching Return of the King. So, that's about it, here are some pictures from our vacation so far. 

The boys working on the entertainment center!

The dogs joined in

Sharks at the aquarium

Jellyfish!

Me petting a shark, I also got to pet the stingrays

Baby Jellyfish

Stingrays and sharks!