ACK...The Scope!

I got SCOPED! AGAIN! ACK!!!!! Dr. Fields was back from his surgery and was seeing all his patients today and since he hadn’t seen me for a few weeks he wanted to look down my nose, of course. When we first got in the room I saw the machine all set up, and Warner tried to convince me that it is always set up ( it always is in Dr. Pou's office, but she hasn't scoped me for a while), but this time it was for real, yo. He printed off pictures for my file and everything. He did say that he won’t have to do it again for a while (he was checking to see if my larynx was swollen and of course it was not). The problem is, he may not want to scope me for a while, but I see Dr. Pou next week and there’s no guarantee she won’t want to scope me! ACK! Anyway he said I was doing well and that I looked good (duh) – but I think he was mostly happy that I had not lost any weight (I haven’t gained any, but I am holding steady)!

I saw Dr. Bienvenu (my chemo doc) today and he seriously cracks me up. I showed him my back acne and asked if it might be related to treatment, and he bust out, “Yeah, it’s probably something we did to you, do you want a prescription for it?” He also wrote me two other prescriptions during my 15 minute appointment. It seems to be the treatment method of choice – throw a prescription at it right now. Oh well, he said I looked really good and my chemo nurses all said I looked really good as well.

I also saw Mell, my speech therapist and that is always a fun time! She’s just so crazy. Apparently she and Dr. Pou talk about me whenever the other one has an appointment with me. Gotta love that!

Here’s a picture of my thinning hair:

I have a stripe down the middle where it hasn’t fallen out yet (it falls out a little bit at a time, but not like the sides, so I’m thinking it will eventually fall out it used to be all full like the middle – the left side is worse). You can also see my back acne / rash (kind of) in the second picture. Oh well. And for anyone who is curious, my brother took a picture of my feeding tube. I keep it taped to my stomach so it isn’t just hanging there. Here ya go (I’m only putting it up because you can’t really see my belly!).

In other more serious news, my friend’s mother is having surgery tomorrow (Tuesday) for throat cancer (on her larynx?) It’s a way more complicated surgery than mine so if you could send up some prayers for her. Unfortunately there are a lot of uncertainties involved with head and neck cancer surgery and unfortunately I know how stressful that can be. I wouldn’t wish this on anyone.

Rogaine?

This weekend has been pretty uneventful – just hanging around the house, sleeping a lot. My taste is holding steady at pretty much nonexistent and water still tastes horrible. So I’m downing as much as I can, as fast as I can. My saliva is back to being thick and I occasionally gag on it which leads to throwing up, but it’s definitely not out of control – like when I was dehydrated.

Today Warner and I are watching natural disaster movies (10.5 and Asteroid so far) because they are my absolute favorite types of movies. I took a Geology class in college and all we did was watch natural disaster movies and pick them apart and make fun of them. Ah, it was wonderful and Warner loves to make fun of me for loving these movies (it doesn’t get any better than natural disaster movies, they are always on tv, and they cost like 5.00 at the store, and they have BAD acting, oh! And they usually involve nuclear warheads, seriously it’s a no lose situation).

In other news, the radiation hair loss has begun! ACK! I was rubbing Aquaphor on my neck and noticed my hands were covered in little neck hairs, no biggie really. THEN I was putting it further back on my neck, and there was actual hair on my hand! So I started running my fingers through my hair and more kept coming out and I had Warner look at the back of my head. Sure enough, I’m losing my hair! The good news is, I will only lose it in the radiation field and where the radiation beams exit my body. So, there are only two spots on the back on my head that are losing hair – so far (and my chemo shouldn’t make me lose my hair, so this should be the extent of it). So, Dawn and Paula can breathe a sigh of relief, no hair shaving party just yet. I’m not freaking out or anything; it’s just another side effect that I knew was only a matter of time.

So, in other news, Mrs. Susan was just freaking out because there had been a dead bug in her room that was no longer there. It finally dawned on her that both dogs slept in the room with her and one of them probably ate it. You can use your imagination for the reaction that took place at this revelation.

Shenanigans I Tell You!

Paula spent the night last night and we watched “Definitely, Maybe” and then this morning we watch “The Jane Austin Book Club.” Both movies were very good and I enjoyed having Paula around.

I had radiation this morning and right as I sat down in the waiting room, on our green couch we always sit on, Josh called me back to the treatment area – I didn’t have time for a quick snooze or anything. Well, I got in, got strapped down (because I’m pretty sure if I was not sufficiently hog tied – they bribe me with warm blankets as well - I would run out the room screaming) and Josh started my CT scan (I get one every day to make sure I’m in the exact spot every day, I mean seriously, what’s 5 more minutes of radiation on top of what I’m already getting). Well, all of a sudden I come shooting out of the machine (I’m used to hearing a click, then moving out a little bit slowly and then moving out the rest of the way quickly) and Josh started lowering the table. I was kinda freaking out, but they had received an error message and they had to fix the machine. At least now I know they can get me out of there pretty quickly. So, I went and waited in the waiting room for about an hour while the engineer came and fixed it – and took my nap! Josh freaked me out when he woke me up to tell me the machine was ready (both Warner and I were crashed out on the couch). So anyway, I got my treatment and that was that.

When I got home, I decided I would just stay up for the morning and sleep in the afternoon when Paula left. I also decided I wanted PANCAKES! Go figure, right? Well, apparently Mrs. Susan had never made pancakes before (a small detail she failed to mention before hand and we had challenged her to make only one, so she couldn’t exactly follow the recipe on the box). So, it was taking forever to get my pancakes because she kept reading the box and setting her cell phone to time each side of the pancake. Finally she declared she was done:

Let's examine closely:

Notice how it is not fully cooked
(because the batter was super soupy!!)
And it's thin like a crepe!
Ah, but I am very thankful that she attempted to make them
and it made for an entertaining morning!

I went in there and said, “Umm…let’s try this again” and Paula and I taught her all the tips of pancake making! So now SuSu is a bona-fide pancake chef, and would love to make everyone pancakes from scratch (or Eggos). We won’t even get into the sausage story.

Like I said earlier, I slept the afternoon away – pancake making wore me out! This evening Warner put frontline on the pups, and Ruekie usually accepts his fate and just pouts and ignores us for a while after - we’ve come to accept this. Edgar on the other hand, thought he was being tortured and killed. He whined and carried on something awful. After we got it on him, he began yelping and scratching and spinning circles and going absolutely nuts! He HATED it. He has sufficiently worn himself out in the process and is now snoring away on his pillow, just fine.

My taste has started to go away. Water is the worst actually – it tastes rancid. So I am probably overdosing on the mouthwash (because I have the worst taste in my mouth and I gag on the salt water mix that I’m supposed to use – it makes me throw up). I can still taste a few things, but they are definitely blander tasting now. My throat is also getting really dry, which is frustrating because I have to drink more of that rancid tasting water. Coffee ice cream still tastes pretty good though – and watermelon! My skin graft is looking really good. I can see around the edges where the graft is and it’s pink and connected to my real skin. My physical therapist is working with my arm to try and get my wrist to actually bend (it goes like 2 degrees in either direction). That’s about it for my news. Next week is a four day week for treatment because of July 4^th. Which is awesome, maybe it won’t be as rough (HA!) and I’ll have a long weekend to let my body repair itself!

Yawn

Apparently I’ve been slacking on updating the blog – when your father- in- law starts calling you out, you know you’re slacking, but hey, it’s been pretty uneventful around here!

There has been a changing of the guards around these parts. My mom is sneaking off to a family reunion in Texas this weekend, and Mrs. Susan is holding down the fort in her place.

I am eight treatments in, which means, twenty four more left. My mouth is starting to get dry, but it’s manageable right now with water (which is actually quite helpful because I HAVE to drink a half gallon of water every day, so you can imagine how frequent bathroom trips have become). My neck is red, but not too bad yet. I’m loading it up with the aquaphor in hopes that it won’t crack or get too bad.

Physical Therapy is going well. My grip strength in my left hand is up to five pounds and now that I’m feeling better this week, I’m working out some with weights (like 3 pounds and 5 pounds). My favorite part is having my neck massaged and stretched, it’s heavenly! (for now since I’m not burned too badly yet).

That is really all I’ve got for now - maybe you can beg Warner to make up some exciting news so you all have something entertaining to read. I’m ready to get up off the couch more, but only once I’ve had a long morning nap. Oh well! I’m going to go watch some more tv!

Not For The Faint of Heart

You asked for it, now here are some pictures of my arm and skin graft! They're gross, don't say I didn't warn you! We will start off nice and easy though with nice happy pictures.

These are my stay awesome flowers from Warner.
They're pretty awesome.

I took this with my Blackberry goofing off
but I like it because you can't see my scar under my neck
so I don't have the double neck thing going on
and my chin has some definition to it!
Ignore the greasiness from the Aquaphor.

Okay, stop here if you do not want to see the grossness that is now my arm!! Seriously, look no further. You will cry, like a baby. You've been warned. But if you enjoy looking at pain and suffering, by all means, continue on. It's pretty cool.

June 2, 2008.
This is the first time I saw my arm unwrapped.
My arm looks like a cadaver's arm - or fake or something like that.
It was GROSS! I sat there for maybe 15 minutes with it unwrapped
and Warner snapped a picture of it with the cell phone. I hardly wanted to look at it.
There's a silicone layer on top of the Integra (the stuff with the shark cartilage in it)
but you can definitely see tendons and all that grossness.
So there's my shark stuff!

June 17, 2008.
This was taken at home the first time we changed my bandages at home
after the skin graft surgery. So that is my new skin! It will fill in with time,
and it actually doesn't really hurt anymore. It's just stiff and weak.
My hand is orange from the betadyne and I've scrubbed that off now so I'm almost normal.
I can take showers and get my arm soapy and wet now.
The shark cartilage is still there you just can't see it anymore!

And I shall leave you with a picture from my emergency room visit.
My poor poor hand!
I'm working extra hard now to try and not get dehydrated again!

I'm going to go eat some pancakes and sausage, because apparently I'm ADDICTED! (to pancakes and watermelon, but not together, because that ain't right - and yes I said ain't, but it's okay because I used the apostrophe, and that makes it alright).

Welcome Back To Society Mrs. Bradley

the swelling is INSANE in my neck
and I really need a shower
and I have football player shoulders
but this is me at 5am on my first day of radiation!

Today my dad, brother, and Paula came up to visit (dad is spending the night). I had been craving pancakes for a few days and of course, it’s the only thing we did not have in the house. So, for lunch today, I disconnected from my pump (shhh…don’t tell my dietician) and went to Cracker Barrel. Yes, a RESTAURANT! I got a kids plate of pancakes, complete with two pancakes and a sausage patty. I ate probably a little over one pancake and a little over half the sausage. Our very observant waitress made the comment that I had obviously had better days and asked if I had just gotten out of the hospital. I said, yeah, something like that. Because the truth of the matter was yeah, I’ve had better days, but I was having one of the better days that I’ve had lately at that time. I was eating at a restaurant and not violently throwing up – it was a good day. After, I had enough energy to go to GAP and I got two new dresses and a tank top. To top the day off, I got to eat out at another restaurant for dinner – McCalisters – which I absolutely love! I ate almost half of my potato which is quite a bit at one time for me! So, WooHoo!

On a sad note, Warner is working a shut down tonight so I have to sleep in my bed alone tonight. I like the added security of him being right next to me. I guess the dogs will have to keep me company tonight!

In other news, I have a small stitch sticking out of the top of my tongue. The pesky little thing is driving me absolutely insane (all the other stitches are starting to bother me as well…dissolve already, okay???? Thanks.). Oh, we have pictures of my skin graft on my arm so, if you would like to see it, then let me know and I can email it to you! It's pretty insane!

The 10 Minute Ab Work Out

Lay down in bed…run to the bathroom…barf…lay down in bed…run to the bathroom…barf…repeat until desired ab firmness is attained, or you pass out.

ACK! What a long week it has been. Mostly just Wednesday and Thursday - which seemed to drag on and on. Wednesday I got out of bed for treatment and then for an hour later that afternoon. I threw up four times and spent the rest of the day trying to keep from throwing up so the medicine could have a chance to kick in. It never did, because it never stayed down. I woke up Thursday just as pathetic and warned my radiation tech to keep a close eye on me because I was barely hanging on and did not want to throw up in my mask – at this point I had thrown up twice already that morning. He felt sorry for me that I was feeling so bad and reassured me if anything was wrong, I just had to wave my arms and he would run in. I made it through, thank goodness; however, I still had to hang around for blood work and a doctor’s appointment at 7. I got some more meds from the doctor, and we headed home. My barf bucket was riding shot gun with me, but I made it home and into bed. Warner pumped me up with some drugs and it wasn’t long before I was barfing again. The count on Thursday was 5 times, including once at physical therapy. I did manage to get out of bed and sit on the couch and watch some tv (I figured it was just as easy to barf from the couch as it was from the bed, I was correct).

Physical therapy would have been great if I had been feeling wonderful. I really like my therapist, he’s really nice and sympathizes a lot and is going to let me kind of work at my own pace. I’m going to go three times a week for six weeks, or as much as I can handle when the side effects start kicking in from radiation. He tested the range of motion in my arms and neck – which is pretty low and he tested my grip strength. My right arm us at 50 pounds but my poor left arm (the skin graft arm) is a big fat 0. I did the hand bicycle for four minutes and that did me in, I was running to the bathroom yet again to empty my stomach contents. After that, he said no more physical stuff and he put me in a private room, with a trashcan near by and worked on stretching out my neck muscles. That was nice because I got a little more range of motion in my neck!! Needless to say, my therapist has his work cut out for him, but he said I should be able to play tennis just fine after all this is over.

Since the vomiting had not ceased by Thursday afternoon, Warner called Dr. Pou for some advice. She told him the best bet was to call Dr. Bienvenu because he would probably want me to go get fluids because my vomiting was so severe. So Warner did, and yes, we had to go to the ER and get some fluids via IV and some antinausea meds via IV, I got two liters of fluids over like 2 hours and I only got up to go to the bathroom once last night, how’s that for dehydration. The ER trip has helped to get a jump start on getting the nausea under control and today has been MUCH better. I haven’t been nauseous or thrown up once. Granted, my new medicine knocks me out, seriously, it knocks me off my feet for hours (but it works). I got home from radiation today (27 left to go!!!!!!!!!!!) and crawled into bed and was out like a light. I would wake up for a few minutes while mom or Warner gave me my meds, but that was it. Apparently Warner came home at 10 to get his boots and kissed my forehead, and I don’t remember a thing, zilch, nada, nothing. I finally got out of bed at 5:30 this evening! And I can definitely go back to sleep again here soon, I’m just a little hungry and trying to come up with something to eat, French Fries sound good but I’ll probably settle with something we have around the house…Hope everyone has a relaxing weekend!!!

4 Down, 28 to Go

Today was day 4 of the radiation treatments. The only sign of radiation continues to be the little bit of a tan Stephanie is developing. More side effects are expected to develop in the next two weeks and get worse from then on. Yesterday Steph really felt bad. She was nauseous most of the day and threw up several times. Unfortunately she threw up the anti-nausea meds too. We set her on a much lower feed rate, which at least let her get some sleep until around three this morning. She has managed to keep everything down since then though. We aren't sure what is causing the nausea, as the dose of carbo platin is supposed to be so minor that it wouldn't cause this. We saw a Radiation Oncologist today (Dr. King, because Dr. Fields is still out from his surgery) and her prescribed another antinausea med and an antianxiety medication in case Stephanie is more worked up than even she knows. needless to say with her feeling crummy yesterday she spent most or it in bed only coming out for a few hours. Please pray for her nausea as the medicine just doesn't seem to be working (and it's all pretty powerful). We did get a letter to try a different, denser, food which should help her feel more normal because she wont be so attached to the pump. And there is a place in Baton Rouge that will supply three cases of the stuff a month for us. On this particular formula that would be about 12 days, as opposed to 8 on her current formula. No real good news in this post other than we are 1/8 of the way through treatments now (and 1/6 of the way through chemo).
We thank all of you very much for your support through comments and prayer for us, we are certainly blessed by each and every one of you guys.

Day 2 And It's Glowing Great!

In case you were wondering how things were going look how great I'm looking!!!!!!





Ha, my brother sent this to me today with the comment, "i snuck in and snapped a pic after your treatment yesterday. u can barely notice the the phosphoric aura... i just hope the smell goes away." I laughed so hard! This picture was actually taken before my first surgery. So, if you need a photographer or some photoshop work done, his name is Charlie, and I can hook ya up.


Day two is done, 30 more to go. I found out I will have to have blood work done twice a week now. Which means more needle sticks in my poor stubborn and tired veins on my right arm. They hate sticking me because they can only do my right arm, because of the surgery on my left and the lack of a vein and artery there. So they have a really hard time putting in IVs and finding a good spot for blood work. I'm already getting pink on my head and neck and chest from the radiation, gotta love being pasty white! Other than that I was nauseous again this morning, but once I got back to sleep for a few hours after treatment, I felt much better. Sleeping is hard because my wrist is no longer splinted, so I have to find a way to support it at night so it doesn't bend too much or get rolled on, and my leg makes it hard to move around with while trying to keep it from touching anything. Oh well, at least I'm on my way to being declared cancer free!


I got flowers from my amazing husband today. The note said, " I didn't send you get well flowers, I sent you stay awesome flowers." See, I told you he was amazing!

Ode To Zofran - We Will Become Best Friends, I'm Sure Of It

Today’s Schedule:

4:10 : Wake up and go to the bathroom, go back to bed

5:10 : Wake up and get ready for the day, reluctantly

5:30 : Take Lortab, which failed me miserably

6:00 : Radiation, which was less than wonderful, but not so bad

6:45 : Sit on an uncomfortable bench for an hour as Lortab induced nausea sets in

7:45 : Head to Speech Therapy

8:00 : Barf in Speech Therapy Waiting Room trash can

8:15 : Speech therapy, watch my swallow study, seriously you should go do one

9:30 : Dr. Kaplan and my shark skin appointment and vac removal

9:45 : Kill the afternoon in the oncology waiting room and take a nap

11:00 : Barf again, this time in the bathroom

1:00 : Chemo teaching session

2:30 : Blood Work

3:00 : Get stuck four times trying to get an IV in, good thing this is only once a week

3:30 : Antinausea meds

4:00 : Chemo begins, lasts 30 minutes

5:30 : Finally made it home

Today would have been good if I wasn’t trying to fight off the nausea all day, but I got some meds (Zofran and some other strong drug) for the nausea to bring home so I should be hunky - dory now. Warner looked like he was carrying enough gear to be taking care of 5 three year olds - meds, food for the pump, IV pole for my pump, the pump, the wound vac, water bottles with Gatorade and water, real food, the computer, and me. Once I got into the radiation room and set up and going, the sound was pretty relaxing, now if only I didn’t have a mask on my face and upper body and a bite thing in my mouth to hold my tongue down, it wouldn’t be so bad - for now. I will hopefully get this pain med nausea under control because I’m going to be living on them once things get bad and I can’t go barfing every thing I eat, that’s no way to gain 5 pounds. Oh, also since I’m doing chemo, please don’t come visit if you are sick or have any type of infection. I’m not doing a high dose so I don’t know how compromised my immune system will be, but I really don’t want to get sick during all of this. Speaking of chemo, it only lasts about 30 minutes, if they can stick my veins. I also got red tape for my arm when they drew the blood, no more lime green! I get to sit in a comfy recliner with a blanket, watch tv, and they even pass out juice and snacks (cracker mainly, that I haven't mastered eating yet!) My wrist is quite floppy now that I don't have that half cast on there, and it looks cheese grated, but we've been reassured it will heal up and that my arm and leg look like they are supposed to. I can even shower and get my arm wet now.

So, I’m going to go take my meds in a few minutes and crash out. Only one appointment tomorrow!

4:30am Why Do You Exist or Tales From a Mobile Pharmacy

Today is shaping up to be along day. The alarm went off at 4:30 this morning. After showering and all that stuff I woke Stephanie up at around 5:10. This was without the dogs. tomorrow I think I'll have to get up at 4 just to take care of our mutts before we leave.

Radiation today went well. Stephanie decided that being at 6 in the morning was a good thing because she could half way go to sleep on the table, which took her mind off the uncomfortable mask. We gave her Lortab this morning to try to calm her nerves down, this ended up being a bad idea as shortly after the radiation she got pretty nauseous. We're hoping very much that her salivary glands stay supernaturally protected through all this. I know it sounds silly, but when Stephanie explained to me all the things your spit does for you, I realized it really is pretty important. So like I said we're praying for the better than best possible outcome on her spit glands.

We went and saw Mell today as well. She continues to be extremely excited and raves about Stephanie's progress. Stephanie got to see the x-ray video from her swallow study, so that was pretty cool, she enjoyed it very much.

After Mell was time for 9 o'clock meds. this was quite the adventure on the run as we were, but we managed to get it done.

We made it to Dr. Kaplan's in plenty of time for the 9:30 appointment, in fact this is where we did our medicine. This is also where we heard that insurance would cover the amifostine if we chose to take it. however the window of opportunity had already passed and thus we are no praying all the harder for the salivary glands. Stephanie says she has no regrets and I hope it stays that way. This visit took all of about 15 minutes. Stephanie makes some pretty hilairious faces when tape is being removed, at least it would be hilairious if she wasn't in so much pain. but we got to see her arm, it looks like a cheese grater was taken to it, but it's better than seeing her tendons and everything. Dr. Kaplan assures us the gaps will fill in and so will the divot in her arm. Her leg on the otherhand will probably be permanently discolored.

We then went to see Vadel about nutrition. She was pretty amazed with Stephanie's eating progress as well. But she was disappointed in the lack of preogress in other areas, so she is trying to get us on a new formula, and on one that insurance will cover (which would be awesome). We will hopefully find something out tomorrow.

Now we're waiting in the Chemo waiting room hoping we might get an earlier spot. They recognized us and wondered what on earth we were doing 4:30 hours before our appointment. but we've killed most of that time now. I wonder if they will give Stephanie anti nausea drugs even though she shouldn't be getting nauseous from the chemo, since she's doind pretty bad today in that department.

When we get home it will be time for the first scar massage. We are supposed to rub down her neck to try and move the fluid out of there. We will also be using aquaphor which should have the added benefit of easing some of the radiation burns on her neck, where some of the most sever radiation will be aimed.

Say Cheese!

So, as promised here are some pictures...

The "smile"




Yeah, it's painful to look at, right?



Some help!

This will have to do for a while.

Notice how incredibly swollen and puffy my chin and cheeks are. Fluid has settled in right above my scar on my neck, which you can kind of see my neck scar in the pictures above! Also, my chin broke out with the worst case of acne I've experienced in my entire life! I also can't wait to be able to fix my own hair again - with products. Right now mom is just blowing it dry, which is fine because I can't really use anything on it once radiation starts, plus I don't go anywhere and Warner just has to deal with it! Now for some pictures of the little punk (Edgar, not Warner, I know you all were thinking Warner here).

Life is hard when you're a dog named Edgar

Millions of Peaches

Just a quick post tonight. My swallowing is getting a lot better. I'm getting more consistent with swallowing when nothing is in my mouth (my lack of ability to do so has intrigued my therapist). With this improvement has come some brave experimenting in the form of peaches and french fries. That's right folks...SOLID FOOD! I ate three peaches and like five french fries - Warner was kind enough to share - he knew I wasn't going to eat them all! Now, it's still a little hard to move food around in my mouth with my tongue so I have to use my finger from time to time and drink a good bit of water to get the food down - only with the fries though, the peaches were surprisingly "easy" to eat!! So, my new milestone has me looking forward to and thinking about Thanksgiving dinner and hoping I won't regress too much with radiation and that my taste buds will have recovered by then! But for now I'lll rejoice about the french fries and peaches! Who knows, maybe tomorrow I'll try something else solid!!! Oh, and I got some love the other day and today in the form of Dr. Pepper freezy pops and Dublin Dr. Pepper (see a theme?). My poor tummy won't know what to do with all that caffeine.


I will have to post a picture of me trying to cheese smile because I crack up (seriously laugh out loud kind of cracking up) every time I think about how I look trying to. My right side of my lips and chin area don't work (yet, maybe it'll work eventually) so I look hilarious - it's been described as painful looking actually. I will leave you in anticipation of that moment when you gaze upon my beautiful face...and laugh, as I have many times.

No More Tape Please

I decided against using the Amifostine. I like the idea of it, but I had some serious reservations about using it – one of which was being strapped down in my radiation mask for therapy and throwing up and not being able to do anything about it. I also didn't want it to protect the healthy cells and in doing so, protect the cancer cells as well - I only get one shot at this whole radiation thing (chemo can be done again) and I want to do it right and get my tshirt. So, I opted out. I'm doing the most up to date radiation therapy that there is - Tomotherapy - and that has increased accuracy and has helped in trying to spare the Parotid Gland in some patients. So it's up to God now and whatever happens will happen, and I'll be okay with it - I'll just buy coordinating water bottles to go with my outfits (do I have oufits??? I don't know....my mom has outfits, I'm not ready to have outfits, right?) if I have to. We pulled the tape off my leg from the skin graft site and oh man, that was awful - I screamed a few times, hyperventilated, and kicked my legs violently a few times. I will give Dr. Kaplan a piece of my mind at my next appointment about all this tape he’s been putting on my body (actually I’ll probably just sit there and cry as he pulls the tape off my arm).


So apparently things are getting dull on my end of the line as I've had several requests for more pictures and stories about Edgar. I don't have much by way of stories about him. He's a puppy, he does puppy things, like sneak attacks, trips on his feet, runs into things, and whines like you would not believe - the big baby. If you come see us, please refrain from making whining noises at him because he will go into full pathetic mode, complete with whining and crawling into your lap and getting right into your face. So, to bribe you all to come visit my blog here's a picture of the little punk:




I'm just kidding about the dull part, I know you all still tune in because of me. I am famous after all - in my own mind at least - and who doesn't like to keep up with the lifestyles of the rich and famous (well, the famous at least)? So because I know you all love me, here's a picture of me from when I left the hospital (notice my hair had not been washed in eleven, count it, ELEVEN days - that's a record for me).





I'll post more up to date pictures of me next time I wash my hair (which could be a couple days) For now enjoy the picture of Edgar and the grungy me! As soon as I get my left arm back I'll be taking lots of pictures, I've missed being able to hold my camera and taking pictures (especially with all the amazing flowers I received!!!) I've been eating a lot of soup, pudding, oatmeal, baby food, and I even had ice cream tonight (it was REALLY cold and I couldn't finish my bowl).


Warner has been a working fool. He's planning on taking Mondays off since I have radiation and chemo those days and we will plan all out doctors appointments (speech therapy) on those days as well. My mom and Mrs. Susan will be bringing me to physical therapy once that gets scheduled. I can't wait to be able to get full motion back and the ability to dress myself!


In the past week there have been two rainbows in the sky and it has helped to remind me that this is all going to be okay - that it's okay to get out of the boat because God is in control.

My Very Own Episode of Grey’s Anatomy – Complete with My Very Own Dr. Burke

That’s right, I had an appointment with Dr. Pou today and when I went to the back and got weighed (161 if you’re curious, keep thinking fat!) I turned around and surprise! Dr. Burke! Apparently she was helping out with clinicals today! I haven’t seen her since my last day in the hospital (although one might think I was best friends with her and Dr. Pou and ate lunch with them every day based on how much I talked about them, yeah, I don't have a problem). So we chit chatted for a second, as best as one chit chats with half a tongue, and I went to my room. Dr. Burke came in and examined me first and got caught up with what’s been going on since I left the hospital. I assumed I was only seeing Dr. Burke that day since she was there but lo and behold, in walks Dr. Pou! They both stuck mirrors down my throat and gagged me several times (they quickly pulled the mirrors out each time, I think they were afraid of being thrown up on, and rightfully so, my gag reflex works like a charm). I had another stitch cut out (there was a close call with almost having my lip cut off – it got in the way because I didn’t pull it down far enough out of the way, but I’m okay, no blood, but almost, and Dr. Pou felt really bad). So I’ve got the all clear to start radiation and chemo now. I will also be starting physical therapy for my shoulders from the neck surgery. Mell apparently has been raving to Dr. Pou about my speaking and swallowing abilities – but if you’ve ever met Mell you know she is excited about EVERYTHING which at first was overwhelming, but it’s growing on me now. At least Dr. Pou said she was bragging about me. So if you can’t understand me when I talk, take it up with my speech therapist, she apparently thinks I'm awesome. I got the tape taken off my trach spot – it’s all closed up now - so I won’t have to rip that off every night anymore and I'm so excited about that!

The visit ended with Dr. Pou hugs all around and her commenting on Warner's sad *edit* puppy dog eyes (I originally said doe eyes but she really said puppy dog, I blame the drugs). Haha, it made me laugh...out loud. She asked how our parents were doing and how we were doing, and we said everyone was doing well (so if you're not, humor us and say you are).

In other news, my spit sucker and I are growing apart. Since I can take more by mouth I’m trying to drink more water and Gatorade to control my drool so I haven’t used the spit sucker for most of the day. I still use it at night about once or twice, but nothing like I used to. Eating and drinking also keeps the nasty taste out of my mouth that used to gag me. I even ventured out today to the doctor without it! ACK!!! It was scary, not really, I was fine and just sipped water a lot.

So, no more appointments until Monday, when most of the day will be spent at the hospital - starting at 6am. I have appointments at 6, 8:15, 9:30, and like 1:00 and 2:00 or something like that and I have to meet the dietitian in between– a bunch!

Kaylie mentioned in a comment that it's like I'm living out Grey's Anatomy and it kind of is. Especially when they were trying to figure out the pneumonia, and they were running all kinds of tests - but as Warner said, it's never cancer on Grey's Anatomy. Plus, my Dr. Burke is still on the show!

Carboplatin - Ya Want Some?

Man, I think I have seen more of OLOL Hospital than I have of my own home. Yesterday’s surgery went well. I don’t like waking up from anesthesia. You see, the problem is, you can fake sleep for a little while in there, but once they see you’ve woken up they keep talking to you and saying your name over and over again so that you wake up fighting mad ready to hit someone. As you can tell I don’t remember waking up at all after my surgery, and actually I really only have one memory of the first two days, maybe a few more than that. One was the nurse telling my dad they would keep me sedated, another one was getting asked the second night if I wanted a sleeping pill (the correct answer was yes, even though I didn’t sleep well) and the other was getting a washcloth put on my head. That’s it, nothing more. So, I have a bandage on my arm connected to the vac and a bandage on my leg. My leg definitely hurt badly yesterday after the surgery – I had the nurse pumping me full of drugs in recovery – but I’m much better today, pain wise.

I’m still having stomach problems, I think my stomach is not digesting the food I’m on very well, and the dietician thinks the same, but she has to try and get us a new type of food through Apria, so we don’t know when that will happen. So for now, I’m back on that wretched pump doing continuous feeds at a lower rate. Hopefully this will settle down the nausea (I barfed twice today, once at 5, right after Warner told me not to aspirate and left the room, and again at noon). So, I need to get healthy before radiation starts.

We went and saw Mell today for my swallow test, and Warner got to watch (I did not) and he said it was pretty cool. Basically I ate applesauce dipped in barium, drank some sort of liquid with barium in it, and ate some crackers with the barium on them. I was successful with everything but the crackers, man those little buggers are tough to swallow with half a tongue! They tasted good though! Again she was amazed that I can not fully swallow without anything in my mouth, but once you put something in there, like water, I’m a swallowing fool. It just goes to show you that I was meant to eat food through my mouth!

We have decided that I will be getting weekly chemo treatments along with the radiation. They are really low doses and should not cause any of the serious side effects (hair loss, nausea, a low, low chance of infertility etc…) He said because of the radiation there shouldn’t be any other side effects that I would notice that I wasn’t already experiencing. The drug is carboplatin, and since I’m getting it every week, it’s a small dose. Basically enough to sensitize the cancer cells (it doesn’t sensitize the other cells, we asked) to the radiation, in hopes to be done with cancer once and for all. So, I will do that on Mondays. When we first met my oncologist, Dr. Bienvenue, he said he had heard ALL about me and now he was finally getting to meet me! See, I told you I was famous - watch out the paparazzi is going to be swarming our apartment soon! So, I’m having the whole shebang thrown at me for this - surgery, radiation, and chemo. Good thing I like my doctors so far!

The verdict is still out on the Amifostine to save my spit. First, we don’t know yet if insurance will cover it, and second it causes severe nausea and vomiting and most people can’t handle it or have allergic reactions (plus it only works 15% of the time in people who can handle it). We asked Dr. Bienvenue what he thought about doing the chemo if he were me and he said absolutely he would but when we asked him about the Amifostine he said there was no way he would take it because he said “that stuff is toxic.” So, I haven’t made up my mind. Saliva after radiation would be nice, but at what cost. I’m already nauseous and throwing up now, so how much worse will it be later?

Saturday I managed to mosey out to Luling for the night and to get a hair cut. My hair is no longer in my face! Maybe when I can wash it again – who knows when because of my leg, I’ll post a picture!

So, Monday starts radiation and chemo, and I don’t think you guys are thinking fat enough for me! I was 160 today at the oncologist and yesterday before my surgery I was 163!!! (Never mind the fact that I didn’t eat much because of my surgery yesterday and I was sick today).

Oh, for anyone who is concerned, no I'm not depressed. I'm nervous and anxious about getting treatment started but that's about it - I just want to know what to expect. I'm really tired most of the time also so I hang out in bed. Plus it's really hard to move around connected to everything and I'm so over watching television!

Cover That Up!

Well today was another fun filled half day at the hospital. This time we (I) set the alarm correctly and didn't have to rush around prior to leaving at 4:15. We showed up and did everything just like we did last time, we even had the same surgery registration nurse (but a different OR nurse). She was very nice again and remembered Stephanie. Apparently being a 23 year old with an unexplainable oral cancer makes you stick out to people. Stephanie finally has an anesthesia record, of over ten pages. Dr. Kaplan came in and explained the surgery again, that they were going to take a flap of skin from the thigh and place it over the integra (shark cartilage compound stuff) to complete the forearm reconstruction. Then it was decision time, where on the thigh to take the flap from? Stephanie didn't care, as she said she had so many scars what was one more. Ever the plastic surgeon, though Dr. Kaplan suggested the inner thigh to be much less conspicuous. Stephanie's mom thought this would be a good idea so that was the decision Stephanie went with. After all "it will be more uncomfortable while it heals, but that's only a couple of weeks. The cosmetics of it will last a lifetime." was Dr. Kaplan's quote. We then told him that the wound vac was having trouble, it's been staying on pretty permanently to maintain the vacuum, which drains the battery real fast. He said once the graft it would need to be on steadily so one of us should go get the cord to plug it in. I got volunteered for this so since I had the car keys and the new apartment keys (more on that later). I got to the apartment at around 7:30 and got a text message that the surgery was starting. After spending nearly all day every day in the hospital with the last surgery it was pretty difficult for me to not be there for this one. Of course when I got in both dogs were dying to get out into the yard. I was pulling into the garage right around 8:05 when Stephanie's mom called me again to let me know they were done with the surgery and needed the cord for the wound vac. As I got to the waiting room they were paging once again because they really needed the cord. Dr. Kaplan came out to tell us that everything went smoothly the only hiccup was that the wound vac started beeping the low battery warning as soon as they got her into recovery so that was why they really needed the cord. Around 9:00 we were told they had a room for us, we waited there until about 9:20 or so and they finally brought her in. Her big complaint was that her thigh hurt now, and she never really hurt after the last surgery, what big weenie huh? It would be the 30 minute surgery that made her complain, not the 14 1/2 hour long one. We got home shortly before noon and I crashed almost immediately, along with Stephanie, I had to make up for the previous two nights. Last night I didn't sleep much because we had to get up for the surgery.

Yesterday (Sunday) was moving day. We moved to a two bedroom apartment so that we could spread out some more. It's also on the first floor which makes access a lot more convenient, and the dogs can run around a lot more. We just moved to another apartment that the company has leased so luckily there was no furniture to move. I stayed up until around 2am Saturday night getting the bedroom, bathroom, and closet "packed" up. I got up around 4am to finish cleaning the bathroom and start loading the truck. around 7:30 I took the first load over to the new apartment and just threw everything into the master bedroom. I went back and finished packing the kitchen and the den, and vacuumed the bedroom and dining room area. I realized was I was packing the kitchen that our pantry and fridge had never been so stocked. Luckily we save lot's of Wal-Mart/Leblancs sacks for cleaning up after the dogs, so everything the kitchen left in the same type sacks they came in in. We had both apartments swapped by 12:30. Stephanie and her parents showed up to help with the second load, and un-packing. There is certainly still some straightening up to be done, and all the hanging up clothes are still in my trunk, but over all the move is done and that's a relief. And now you see why I crashed so hard this afternoon when we got home.

One bad thing about the new apartment is the room is distributed differently (master closet is much smaller, but there's a closet under the stairs, master bedroom is a little smaller). The other drawback to this apartment is that it's ADA accessible, which means the tub is smaller in the master so that there is room for the shower, which has a bench in it. Also the cabinets and counters are lowered, and the washer and dryer are smaller, the kitchen is wider for wheelchair access, but has the same storage space.

The dogs are certainly enjoying all this new space and enjoying me not trying to settle them down when they get rambunctious. They've learned they're way around, but still find new smells to check out throughout the day.Edgar continues grow, and to quote our boss when he first saw him "Look at the hooves on that animal!". It's a little difficult to try and train him since he is generally far more interested in convincing Ruekie to play with him than working for treats. Except when it's food time, he's ALWAYS ready to eat (both his food and Ruekie's).

Tomorrow we will go back to the hospital so that Mell can do swallow study. She's worried about Stephanie aspirating so the study will show her how Stephanie swallows, apparently the contrast she has to swallow for everything to show up on the x-ray is pretty nasty, so you can imagine how much she is looking forward to that. After the swallow study we will go to the radiation oncology dietitian and see if we can get Stephanie on different food. Preferably something denser so she can eat less and her stomach won't feel full of liquids all the time. Currently we try to feed her 14 times a day in order to get the nine cans she's supposed to be "eating" into her. this keeps her full as the only times she doesn't get fed are the times we fill her up with the liquid medicine. Then we will meet with the Medical Oncologist, who will tell us about the anti-radiation drug that is supposed to improve quality of life after radiation (protects the salivary glands) but doesn't protect the cancer cells. He will also talk to us about any chemo-radiation protocols that might apply to Stephanie's very unique case (as I said before she's pretty famous in the radiation department, we'll see what medical department thinks about her too). On Wednesday we go back to see Dr. Pou again, much sooner than the original plan of three weeks past the last appointment, but Dr. Fields recommended it to make sure her surgery wounds are healing up pretty well. It's not a big deal to delay radiation a week, but if something happens with one of the wounds during radiation they don't stop the treatments unless it's VERY severe, so Stephanie would have to deal with even more discomfort during what is a very uncomfortable experience anyways. This ended up being far longer than I would have ever intended. Thank you all for your continued prayers, above everything else these have helped sustain us.

All any of us is guaranteed is the present, this knowledge, while frequently given lip service to has become increasing relevant in our lives, thus "THIS is the day the Lord has made, let us rejoice and be glad in it".

You Have a Nice "Glow" About You

Yesterday was Dr. Fields appointment day. He sat us down and talked to us once again about the treatment plan for radiation, which will start on Monday June 16th. He made sure we understood that we could still not do radiation and Stephanie would have between a 5-10% chance of the cancer not coming back (in his estimation). He said that due to the positive lymph node, the size of the tumor, and the fact that it had invaded the nerves he very strongly suggested radiation to continue treatment of the cancer.
We also met Amy who will be the one doing the therapy every day. We got the schedule, which is 32 treatments long and will be complete on the day after our second anniversary.
This is the last time for at least 3 weeks that we will see Dr. Fields, he is having his own surgery on Tuesday (the day after Stphanie's skin graft). He will be out for at least that time and maybe longer. But he told us not to worry, seems my beautiful wife is famous there in the radiation oncology department, and everyone knows her. So we will be able to talk to people that are familiar with her case, and if need be find someone that can relay questions to Dr. Fields (he didn't give us his cell number, unlike Dr. Pou, but he is still an excellent doctor, and the best they have for head and neck cancer). We continue to pray daily for Stephanie's recovery from both the surgery and her future recovery from the radiation.

HGTV You Are My Constant Companion

I have gotten off that wretched food pump that has kept me alive for the past couple of weeks. We are now just syringing in food every hour. It’s much nicer not being attached to the pump 24 hours a day. Hopefully I can get up to eating “meals” six times a day, so I don’t have to start feedings at 5am and finish at 8am (or later if I miss feeds, like today because of doctors appointments).

I had speech therapy today, and apparently I have swallowing problems, but my speech is really good. I will have a swallowing test on Tuesday to make sure nothing is getting into my airways when I swallow. I found it easier to swallow some water than it was to swallow spit, so I just think my mouth was meant for food, and that I can be bribed to swallow properly with food. I tried to eat some applesauce – the first bit of food in my mouth in almost three weeks – it was quite a challenge because it was thick and my tongue did not cooperate. Imagine me trying to swallow and tipping my head back trying not to let it fall out of my mouth – I’m positive Warner was laughing inside, right along with my therapist. I did manage three bites of it though! I’m allowed to start drinking water and I can eat blended foods three times a day – mostly just to enjoy the taste of food again. So, tonight I had a small bowl of blended chicken noodle soup – and although it looked gross all blended up, it tasted like chicken noodle soup – which is awesome that I can taste it. So, I can’t drink juice yet, which I really want, hopefully next week. I really want French Fries too, from Wendy’s, or Whataburger, or wherever dang it, but I have a feeling that is still quite a ways off – I can’t chew anything yet, because they don’t want me to bite my tongue – which I would surely do, I do it already (but I only bite the side that has sensation in it of course). I want Dr. Pepper too…maybe that’s how I will celebrate the end of radiation, which starts on the 16^th at 6am (because my husband likes to torture me and wake me up early, plus I’ll be getting out before it gets too hot). No, actually we wanted to do it then because Warner won’t miss much work and I can come back and sleep the day away after. I have problems with a few word and letter sounds which I guess it is to be expected, I am missing half my tongue you know. Mom bought me some yogurt, potatoes, soup, and baby food desserts – which will be thoroughly enjoyed (even though they are thick and hard to swallow).

Feeling is slowly coming back to my face and neck area - slowly. And it feels like a big ol bruise and it tingles. In three weeks I'll get some exercises from Dr. Pou (I seriously mention her in all of my posts don't I?) so I can get some mobility back, but she wants all the vessels and nerves to heal first. Mostly they involve massaging (yeah, massages for me, and I have to get them, doctor's orders!) because there's a lot of scar tissue there and stretches because I can't lift my arms very high, let alone above my head very well. So, if you ever have a neck dissection, you can totally ask me about what to expect - I really wasn't too sure what was going to happen with that but I definitely was not thoroughly prepared for the achy neck and shoulders and back - oh and the double chin from the swelling (yeah, they can have that one back), but I guess I tried not to think much about the side effects before the surgery. If I haven't mentioned it before I'm really glad I did not have the mandibulotomy, but I hate that I had the tracheotomy because I have to take my bandage off ever day, which is taped to my skin and it HURTS like the dickens (like my mom would say) when you rip it off.

I have been watching my share of tv lately and it’s driving me insane. The problem is that doing anything makes me so tired and I’ll sleep the afternoon away. I think it’s better to be awake and occasionally walking around, than to be knocked out cold in bed all afternoon. My other form of entertainment comes in the form of a pup named Edgar. Dear, sweet, innocent Edgar has discovered his tail. He runs round and round chasing it several times a day until he falls over. Then he proceeds to attack his tail with full on force and yelps in pain as he is slowly putting two and two together that biting the newly found toy was not such a good idea – but I haven’t the heart to spoil his fun (and my entertainment) by telling him that toy that keeps taunting him is actually attached to his body.

Here's To Gaining Weight!

I went to see Dr. Pou yesterday – I think I like her so much because she’s so sassy and confident – it’s nice to be around someone like that during all this. I will be seeing a lot of her over the next few years. I go again in 3 weeks, and then once a month for a year, then every two months for a year, and then every 3 months for a year, and then every six months after that. She cut some stitches out of my tongue so it feels a little more normal now that I don’t have the stitches poking my mouth. I still can’t try and eat anything until I go to speech therapy tomorrow (Thursday). I am anxiously waiting the moment I can sit down and spill half my food down my shirt while I eat through my mouth.

We had a radiation scare the other day. They had called and said I would go in Friday for a trial run, and then possibly start radiation on Monday – at 3 weeks after surgery (instead of the 4-6 they had originally said). Dr. Pou quickly nixed that idea at our appointment because I need to heal more – but she said I’m looking good. Plus, I’m having surgery on Monday. They are going to talk about everything tonight at their meeting anyway. That’s right, on Wednesday nights all kinds of doctors and medical professionals talk about me, I’m quite famous. Okay, they don’t talk just about me, but I do come up, for like 5 minutes at least.

Warner also got to step foot in Best Buy yesterday. We went to look at movies on our way home from our apartment. I sensed him drooling on the way home as we passed by, so I offered to stop. He didn’t get to look at video games because I was too tired but we did make it through the movies section and we picked up a couple.

We are waiting for the food we ordered to show up, so for now I’m eating chocolate ensure through my tube. But don’t get too excited. It’s not like I can taste it or anything. It just goes straight to my belly. Occasionally I do burp and taste it, but that’s usually just the not good tasting Glucerna stuff.

Oh and I have to gain 5 pounds, so think fat for me – I’m already eating 2400 calories a day and sitting on my butt all day long, so I’m doing my part! So, if I don’t gain 5 pounds, I’ll know you didn’t think fat enough for me!!! (I only lost 2 pounds in the hospital!!!)

Oh well, now you are up to date!

Back to Work

Yesterday was my first day back to work since the 19th. It was difficult leaving Stephanie, even in the very capable hands of her mom. If I had enough vacation I would probably have taken off long enough to be done with radiation even. Work has been great to us. First of all they gave Stephanie a job, then when all this happened they have given both of us all the time off we need for appointments and such. They have been much better than one of the girls in ICU waiting room. Her dad had emergency open heart surgery with 5 bypasses, and when she told her office she would be going to Baton Rouge her boss told her "Well this is a really busy time". Later they sent her a text message asking if she would be in the next day. That really makes me appreciate these guys all the more. Regardless, now that I'm back from my twelve days off I don't really know what to do with myself. It's been difficult getting back in the swing of things, especially since most of what I did every day is located an hour away from here, and someone else is covering for me right now. So Im stuck in the office doing inside work, which is very hard after spending every day outside for teh past 6 months. Stephanie continues to do better. Yesterday at Dr. Kaplan's we learned Stephanie will have the permanent skin graft done to her arm Monday June 9th, and a week later will be off the wound vac (one less tube, yippee!). Today is also the start of chemo for oneour friends in Siloam, you can go to her blog and see striking similarities between our two stories. She is Vicki Dees under our friends column. Please pray for her during this time as well.
Today we see Dr. Pou for a follow-up and to ask her when Stephanie can get off this high dollar food. It costs $30/day to feed her. That's like going out to eat for every meal, according to one of my co-workers. I told Stephanie she should think of it that way, and when she's better we won't have to out to eat, after all she'll have eaten out every meal for several weeks.
We are planning on discharging ourselves from home health on Tuesday so we can start speech therapy on Thursday. We will find out the radiation treatment plan from Dr. Fields on Friday. On Tueday we will meet with the medical oncologist to see if he reccommends anything in addition to or different from Dr. Fields.

*Notice* Uneventful Post Ahead!

Two uneventful days! Yippee!!! Tomorrow I get to go see Dr. Kaplan for my arm and I’m actually looking forward to it. I get to see a doctor and have them tell me how good (or bad) I am doing. Tuesday I go see Dr. Pou.

My dad came up Saturday afternoon and stayed overnight and most of today. I haven’t seen him for a few days, so it was good to have him around. I think he was on the verge of picking me up off the couch and carrying me to Cabelas. I think it drove him nuts to see me inactive – I mean, it drives me insane, but just taking a bath wears me out, and I don’t even bathe myself yet! I can’t lift my arms up too well, and I have that dang arm splint, cast, graft, thing. Maybe next weekend. I did sit on the floor with the dogs a little bit and play with them, which was fun!

Tomorrow is hair washing day. My mom washed it yesterday for me and it was so nice, but she didn’t have the energy to do it today, so tomorrow it is! YESSSSSS! Haha. Maybe I’ll even put on real clothes for my doc appointment so I look less pathetic. I wonder if my jeans still fit, the only weight I have lost this whole time is my arms and legs. They are scrawnier than before – if you can believe it!

Today is the first day that I got my daily requirements for calories – 2400. That’s from eating day and night. My stomach is slowly tolerating higher rates – except I’m starting to burp some, and it’s not pleasant!!!

Warner still continues to be an excellent nurse, he even changed the bandage over my neck from my trach tonight. My mom will be taking over tomorrow when Warner goes to work for a little bit. A job I’m sure she is anxiously awaiting! I guess I can't make my caregivers mad or else they will starve me to death!

Well, I just got untied from my feeding stuff, so I have two hours of only being attatched to one cord (at my arm), so I’m going to go enjoy it!!!!!!!! I shall start by sleeping laying flat for a little while!!!!!!!!!