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!