Saturday, May 31, 2008

I'm Off the Couch (at least for now)!

We made it home last night after quite the exhausting day. We were told early in the morning (when Dr. Burke came by for her first rounds) that we would be discharged. Then we had an appointment with Dr. Fields to start radiation treatment planning, which lasted until 11:30 or so. When we got back I talked to several people, the home health person that sets things up, a social worker that talked about what my insurance will and won't cover, and another social worker. Part of Stephanie's recovery is that the wound on her arm is covered with plastic and a vacuum pulled on it to remove any build up of fluid. The company rep that supplied the take home unit I was told had called around 9 that morning and was on his way with it. Great I thought, they should be here soon. Wrong, he got there around 3 that afternoon. While waiting for him to show up I again talked with the home health provider, learning in the process that our insurance would not cover both the home health nurse and the speech therapist that works with Dr. Pou. I would think it would be cheaper to go visit a speech therapist instead of having one show up at our apartment, so I argued the point with them, but honestly there was nothing they could do. Even though Mel is a little happier than we would usually like, we have met her, and she has examined Stephanie before. Also Dr. Pou thinks much more highly of her than she does the home health speech therapists. So we decided we would try out home health for a week or so and then ask them to discharge us so we can go back to Mel once we have things figured out here at home. Thankfully most of the home stuff is all about valves and fluid flow, which is right up my ally. Once the wound vac vendor showed up all of a sudden I got a phone call from the health equipment provider to let me know insurance doesn't cover the tube feeding goo. This was of course disappointing, but more so the woman wouldn't let me of the phone to learn about the wound vac. I got pretty testy with her on the phone. Especially after she told me the food would cost $62.50 and then said she needed a credit card for the $100 bill. I made her explain that one, we were paying co-pays on the equipment, which would have been nice had she mentioned that prior to telling me the bill. So I missed most of the wound vac demonstration, but that was ok, because we were going home! Nope. We were really waiting on the portable suction machine (aka Stephanie's best friend). Apparently they had told our nurse that we were only waiting on the wound vac because they thought the suction machine would show up WAY before the wound vac would. I was always told not to assume. At 4 the guy from Apria (home machine supplier) showed up with the suction machine. He set it up and showed us how it worked, and finally we were really ready to be discharged. Now we wait on transport. We waited long enough though, so the nurse performed the transport for us. We actually left the hospital and 4:30. We got to the trusty Wal-Greens at 5:00 and I handed them Stephanie's 7 prescriptions. "This will take at least twenty minutes" she said. I told her that was fine I had to leave anyway, and I would be back. We stopped by Taco Bell because Stephanie hates Taco Bell, so I didn't feel bad eating it in front of her. Finally we made it home and Stephanie went straight to bed. and lay there for most of the night. I unloaded my car and the little bit that was left in Stephanie's car and then started eating. The Apria guy showed up again around 6 with the pump, the food and the IV stand, but no bags (part of the $100 I had just shelled out). So he left and I called up Wal-Greens and used their automated deal to check on the prescriptions, which the machine said weren't done yet. In the meantime Paula, Mary, Ruekie, Edgar,and Pilot showed up. Thankfully they were all pretty tired and didn't do too much other than sleep. So we waited some more, the Apria guy made it back before the home health nurse, with the bags and syringes. He was scared of Ruekie, who gae his normal doorbell greeting. He showed me how to set up the food pump with these bags, which is a little more involved than what the hospital had, but still pretty easy. Then he went through the steps to set up the flow rate, again pretty easy and right up my ally. I called and checked on the prescriptions again, with the same result. The home health nurse showed up and went over several things with us and took Stephanie's vitals, while saying we were doing a good job with everything. Once she left I again called Wal-Greens, and this time talked to a person. Turns out most of the prescriptions were filled, but they were out of of one of the drugs and had a limited supply of the other. This was roughly 7:45. I asked if they had the drugs anywhere, she called around and couldn't find it at any of the local Wal-Greens. Then she offered to check Wal-Mart, I said that would be great, but in the mean time I was going to head up there to pick up the ones they had. I got there around 8:15 (they close at 9) and found out they had found the medicine in Geismar/Dutchtown. So I hightailed it out of there and headed to that Wal-Greens. I got there at 8:45 and thankfully the first Wal-Greens had called in the prescription for me. I got home just in time to give Stephanie her meds, but missed saying bye to Paula and Mary. There were lots of technical difficulties with the equipment, the feeding tube didn't want to stay locked into the peg end was the main one. Finally after a long and very tiring day we were able to go to bed.
At this point Stephanie for the first time expressed her frustration with the whole situation, we admitted to each other, that neither of us understood the circumstances, for any of this.
We cried some, and I was reminded of this space and the comments we have received here. The reports from all of you that read that have shared how we have blessed you in some way or other. Although I am not yet prepared in my walk with Christ to say that your blessings are worth this magnitude of suffering, I am gladdened by this thought, and buoyed by the knowledge that good will come of this. Good WILL come of this.

Friday, May 30, 2008

Home and Happy

I'm HOME!!!!!!!!!!!!! And gotta say I'm pretty nervous. I got used to the comfort of doctors right there and seeing Dr. Burke and Dr. Pou's (she wears sassy high heels in case you were wondering) smiling faces around 5 am every morning, no doubt headed to surgery, and having the nurses near by. My gag reflex is really bad right now, so I've thrown up once since getting home. But, I'm home with my mom and Warner and my puppies. So I'm happy!

Thursday, May 29, 2008

The Return of Shark Girl

that's my spit sucker
I haven't relearned
how to swallow all my spit
so we are best friends

I guess I can tell the world hello again since they’ve decided they won’t let me out of here yet. I have at least another day here while they are running more stomach tests (tests have become the theme of my life). So lets see, my earliest memory after the surgery was waking up in ICU that night (I was mostly kept sedated and on sleeping pills so I wouldn’t move around much), and James (my nurse the first two nights), was of James taking my stats and putting a washcloth on my forehead – then I was quite out of it for a while. The worst part of ICU (besides a couple “inattentive nurses” was having a catheter (I wanted that less than I wanted a trach – seriously, I would have taken a diaper. Bu worse than that was the bed pan in ICU, but I shall spare you the glory o the bed pan. Lets just say things are better now. My absolute favorite nurse was Melissa and she came to see me in the RCU the second day I got here. She was awesome. She was the one who put the ice under my arms when my fever was 102 and she was the one who noticed my feedings were not going so well. She paid close attention to me. I need to get back over there and see her soon.

So, the beautiful world of cancer, surgery, and hospitalization – in ICU they take stats about every hour. Which means no sleep – whatsoever. In RCU they do stats every four hours, which is bad enough. Doctors begin rounds around 4 am. About the time of rounds. I have had my blood taken at least once every day, sometimes twice – which has left my poor right arm (they can’t do anything to my left because of the graft) a lovely shade of greenish purple from the iv’s and blood work. Since I had pneumonia – I had x-rays every morning, sometime between 4 and 6 am. And I had breathing treatments every 6 hours.

So I had the trach out which is nice, having them out means I can move my head around easier now. It also means when I talk or cough I have to put pressure on the bandage or else air come out the whole – which is WEIRD. I’ve started some PT – which I think the best part is the wheelchair ride over there – it’s kind of fun and I get to see the real world outside – fast food joints and all. For those who are wondering, my hair has not been washed in about 10 days, I have had baths but no hair washes. I have not brushed my teeth either – yeah, I agree, gross. I need to ask when it will be ok to do so. I’m really craving juice and Dr. Pepper but not really any food. My nurse today was putting vitamin drink stuff in my feeding tube and she was like, mmmm grape, here, smell, and put it up to my nose. I was thinking great, let the girl smell the one thing she wants, that she cannot have. And it smelled sooo good – I could smell it with her putting it up to my nose), I have speech therapy on Monday and I can’t do much until then, so I’, hoping it goes well and I can start drinking stuff then.

I’m waiting to get some feeling back in my face. My right side is pretty numb under my chin and my ear and my right side under my chin (but only above the staples line on both sides), but every now and then I get these annoying little twitchy pains, so I think the feeling is coming back. At least I hope so- it makes for a very goofy smile otherwise.

I was worried about losing my oxygen tube, at first, when they took that away (when I had the trach out)– we had bonded. It had brought me much needed humidified oxygen for about a week. But I’m glad it’s gone – one less tube!

So, I guess I have to mention how amazingly wonderful Warner is. He gets up at my every need and checks the machines when they beep – and he calls the nurse for me. He understands me when I talk – which is a miracle in itself. He has slept every night in the room (in RCU) or in the waiting room (while in ICU) with me. But he did eat a cookie in front of me last night! It was white choco. Macademia so he was pretty safe. All in all, I can’t say enough for how awesome he has been through the whole thing.

So I’m here. Making it. I’m ready to get on with it all. I have my moments – some are better than others, but I hope it all gets better when I get home from the hospital and back to my puppies (Mary – you don’t get them forever, although, you seem to be taking the most amazing care of them!!!!!) and stop sitting around all day. I’ve still got a long way to go, but don’t feel sorry for me. I realized I had tons of plans for my life, and yeah, some of them are still the same, but as far as the others, God never meant for them to happen anyway, and that’s okay. So, on to more doctor appointments.

Wednesday, May 28, 2008

More Happenings

After starting off really good today, we had a bit of a letdown this evening. Shortly after physical therapy, which Stephanie excelled at, she started having stomach issues. Now that the pnuemonia has been taken care of, the staples are out, and the trach is out, nutrition is really the only thing holding us in the hospital.They don't want to send her home if she's going to end up malourished. This is a concern because she so far cannot handle her feedings at a very high rate, currently she would go through about 1200 Calories in a day, which is nowhere near enough. So we might be here another day while the stomach docs check her out. We met the guy this evening, but he was just interested in meeting us tonight and getting a little bit of a history from Stephanie. We will know more tomorrow.

Many Many Events

Yesterday and today have both been very eventful, and it's only 9:30 today.
Yesterday Stephanie took a walk half way down the hall, and then later with the physical therapist all the way down the hall (for those of you that didn't read my mom's news ruining comment, she really needs to get her own blog eh?). She also had her trach tested by Dr. Burke and later plugged to see how she did breathing through her nose and mouth only. She did really well. Today Dr. Pou came in to take a look at her. She said Stephanie was doing really well especially with her trach plugged. She was even able to tlak a little bit, but Dr. Pou wants her to go easy on the tongue movements until Monday, when she will start speech therapy. They are confident that if Stephanie can handle the feedings she will be going home tomorrow (Thursday). Later this morning, Dr. Burke came in and removed some stitches from the underside of Stephanie's tongue, the staples in her neck (I counted between 45 and 50), and the trach. Stephanie now has just a dressing over the place where the trach was. They say the trachea will heal in about 24-48 hours, and the incision in her skin in 1-2 weeks. Today Stephanie is also scheduled to go do the stair machine in the gym upstairs so that she can make it into our apartment. That's all I have to report now.

Monday, May 26, 2008

This Place is WAAAAAY Better

Well, they finally moved Stephanie at around 7:15 this evening. I can already tell you this place is way better than the ICU waiting room. They have a bed (kinda), the nurse brought me snacks and ice and juice, this nurse seems very nice as well.

Stephanie had a very eventful day, It started with Dr. Burke pulling the remaining two drains (one in her neck and one in her tongue) and also changing out her trach. Then she had the PEG tube installed in her stomach. Next came removing the catheter, and then being moved. Finally she got up and walked to a "bedside commode". Now she is sleeping (apparently) peacefully in the hospital bed and I am about to try and do the same in my kinda bed.

Sunday, May 25, 2008

No Room at the Inn

Praises today, The doctors (Nuss and Daigle) came in this morning to tell me they saw no reason not to move Stephanie to the Respiratory Care Unit (RCU). She has to go there because of the trach. Unfortunately there was absolutely no room in the RCU, in fact the guy in the bed next to Stephanie was doing real bad and they wanted to move him there, but ended up just moving him elsewhere so his family could be with him. Thankfully Stephanie's situation is no where near that desperate, so we can live with the SICU for a little while longer. I told Melissa today that we liked her, but I didn't want to see her next time she worked (unless she transferred of course). We had a good day today, my parents and sister will go home tomorrow, so we ate at a Mexican restaurant to bid them farewell. Stephanie was pretty awake most of the time, she got up in her chair with very little help and stayed in it for about four hours. The physical therapist said she thinks maybe they'll start walking tomorrow which would be great for Steph, every step she takes is one closer to removing one more tube from her. Her fever today was gone, and her temp stayed right around 98 all day, another praise, she's also started watching tv, I guess the drugs aren't entertaining enough for her anymore. I try to remind her everyday that they won't let her take the pump home with her.

Saturday, May 24, 2008

0 Witty Titles Here

Today was a good day all around. Stephanie had another drain removed from her neck, and the favorite nurse (Melissa) was on. She will be on again tomorrow, and we're hoping Stephanie's fever will stay down and she can convince them to move her to a room. The visits with Stephanie were all good, we were able to laugh and joke with her, she lost no time picking on my dad and mom, and Charlie.

Tonight Tim is on again. He came out to get me because Stephanie was having a new IV inserted because her other two were getting old and hard. She asked him to come get me for moral support. I was glad to do it. Afterwards he let me hang out with her for a little bit, which was cool, I got to play nurse, but I certainly didn't live up to Melissa's standards, and I'm not sure I made it to Tim's. I am pretty sure I blew Tina out of the water though. Apparently I'm just not quick enough for nurse work (except at scratching her back and head).

Friday, May 23, 2008


Today Dr. Pou gave us the pathology results. The tongue margins were clear, and only one lymph node was positive. The positive lymph node did not have extrusions (which probably would have led to chem-radiation) so that was good. The tongue margin did show tumor in the nerve endings (or something like that), but basically it doesn't change the treatment either.

Also they did a CT scan on Steph's Neck and chest. There were no abscesses in her neck so that was great, and they found what they think is the cause of the fever in her chest. Apparently she has fluid in the lower lobe of one of her lungs and it is partially collapsed. She should be fine with antibiotics, they have her on pretty strong road spectrum stuff and may put her on something more specific when the cultures finish growing from the snot.

Stephanie wasn't doing great in the third visit today, frustrations were running high all around due to communication again, and she was running a VERY high temp, coughing a lot, etc.

The last visit of the day went awesome though. My dad and sister drove down so she had even more visitors today. Luckily it was on this last visit of the night when she was feeling the best. She seemed pretty happy to get to see them too, although I think Anna was scared of hurting her. All in all today is probably the best day we've had since Monday.

Oh yeah I finally got a real couch so I slept a lot better last night. Tonight it looks like I'm going to share this area with a couple of ladies, they better be quiet or I'll make my mom ask them questions.

I Can't Believe...

...We're in the middle of day five.
Today has been good so far. The good nurse is back, Stephanie was very alert and has started writing to us, and she was sleeping very well on the second visit. Dr. Pou put in a drain between her flap and tongue to see if there is anything that needs to be drained down there. This was just before our first visit. Still no word on the pathology report. The second visit Stephanie's temperature had gone down significantly, it's hovering right around 100 now. The infectious disease doctor said the fever may be caused by morphine too, so they've put her on a different pain killer. Her urine looks much better, last night there was blood in it, but today it is clear. Apparently the catheter got bumped when they were moving her at some point last night.

Thursday, May 22, 2008

Day 4

Todays last two visits were different. The 5-6 one was good, Stephanie was alert and and seemed comfortable for the most part; however, it was during this visit that Dr. Pou left us all hanging. She mentioned that she had the pathology reports in passing, and didn't say anything else about it. I called her after the visit to get an update on everything she did, and asked out the report. She said that yes she had it but she doesn't like to give that type of information out over the phone, but it's nothing to worry about (yeah right fat chance of us not worrying). She had a question for the pathologist, who happened to be out when she called, so once she gets the answer to the question she will give us the report.

She and Dr. Kaplan also went over Stephanie thoroughly to see if there was something they could determine as being a cause for infection. Again there wasn't, so she talked to the doctor in charge of the ICU and made him aware of their concerns and consulted with the ineternist about the case. They should have cultures from Stephanie's blood, snot, and urine in 24 to 48 hours to help determine the type of infection.

The late visit was another tough one as Stephanie continue to cough stuff up. The PCA pump seemed to be helping, but she was still not looking too god when she did cough. She also had her leg arteries and veins checked out with a sonar type thing. I was having a pretty hard time figuring out what she wanted after everyone else left, and i could tell it was very frustrating for, which made me feel real bad. Hopefully tomorrow will bring more answers than just the pathology report and Steph can be moved into a private room.

Mid Day 4

The first two visits today have been pretty good, Stephanie has been awake and alert and very communicative. The respiratory people taught her how to suction out her mouth, but she still needs help when she coughs stuff up through the trach. She continues to look better every time we see her, although as she coughs it obviously hurts so much it's hard to watch, but it will help her out in the long run. We saw Dr. Kaplan today, he is impressed with the health of the flap, he says the sound of it couldn't be any better. He also ordered her a pain pump so that she can give herself her own morphine and not have to flag down the nurse when she is in pain. He is worried about her elevated heart rate and fever, he doesn't think the fever is from an infection anywhere they were because the neck incision looks very good, but it's slightly worrisome to not know where the infection that's causing the fever is. He's asked an infectious disease doctor to come take a look at her and possibly suggest a different broad spectrum antibiotic. Dr. Pou and Dr. Burke will be by later and they will determine whether or not to give Stephanie her own room, Dr. Kaplan's vote is to leave her in ICU until the heart rate and fever comes down. The most recent nurse leaves a little to be desired (at least while we are present) and Stephanie doesn't appear too impressed with her either. The previous three nurses have all been excellent though.

This waiting room is probably one of the most depressing places in the hospital though. There has been at least once when they had to delay the visits for the people in the cardiac unit because they were resuscitating someone. Shortly after I overheard that I heard them call a family up to the desk, and all I could think of was how awful it would be if it was their family member having trouble. I also am hearing about a lady's husband that had a pretty bad motorcycle accident and has sever head trauma. It's tough to wait here and only get to see Steph for four hours every day, especially days like yesterday when she was asleep for 3 and 3/4 of the time.

Wednesday, May 21, 2008

Day 3

The last visits of the day were actually quite eventful compared to the first. On our third visit, they had Stephanie sitting up, and she looked really good. The only problem was that they also had to suck out her trach while she was sitting up, and that looked to be a whole lot more uncomfortable than normal. Our last visit of he day was very good too. She woke up towards the end of it, when I was the only one in there and she was very alert. Even though the communication is tough, it's much better being with her when she is alert and we can at least give communicating a chance. We got several boxes today, one full of books for me, and one full of books for Stephanie. One set of books has words, the other just blank shapes waiting for color. I'll let you guess who gets which set. Though I will say it looks like Gordon managed to hide some his favorites from Chris. And Now I am going to try to catch a few winks because I am exhausted.

Mid Day Update Day 3

They've started giving Stephanie breathing treatments through the trach to make her cough, which will also help her get rid of it faster. It's really painful to watch someone with a trach cough, seriously it makes me feel so bad for her. They will also start making her move around some, this will hopefully make her feel better faster in the long run, though I imagine she'll be mad about it during the therapy sessions. She's slept for most of our two visits today, apparently she didn't sleep much during the night. I also talked to Dr. Pou, she still feels things are going great. I asked about the trach size, she said it was a normal size for women, maybe a little smaller because Stephanie has a small trachea, but definitely not a pediatric tube. As always she continues to look better every time we see her, I only hope this continues. We are all still anxiously awaiting Friday's pathology reports.

Good Morning Mr. Security Guard

At 4 this morning the security guard woke me up to let me know the nurse and the doctor had been looking for me. Of course at 4 in the morning the SICU is closed if you don't have a badge to get in, so he called some folks and the nurse was going to come back to get me. When he came out he asked if I just got nervous or just needed to see Stephanie again. I relayed that no, he had been looking for me. I got to see Stephanie again so I wasn't too upset, but it was still scary when the guard told me both the doctor and the nurse came out to look for me. I told him he had the wrong person as I walked back by he said they must have been looking for someone else in a red shirt. I asked if they had given him a name and of course he said no. Before going back there I also asked who the nurse was but he couldn't tell me, just that it was "that guy with the haircut, you know, he had his like this."

Tuesday, May 20, 2008

End Day 2

We just got done seeing Stephanie for the final time today, she really is looking better every time we see her. The swelling continues to reduce. She should be allowed out of the SICU Thursday morning.I just hope the trach comes out shortly thereafter, or maybe even before. We heard this evening that she had a pediatric sized trach, the ICU Nurse wasn't sure whether that was a necessity or an election by Dr. Pou, I will ask her tomorrow if she comes by again. She got her first t-shirt today, form th nurse, unfortunately it's dookie brown and an XL. Unfortunately she was in a lot of pain this evening, but she is using more and more communication tools, she's even started using her legs to signify that she's hot. It's very frustrating for her and for us to not be able to communicate the way we all used to, she can't start writing and speech therapy soon enough, let me tell you. I am still amazed at how good she looks (as long as they keep her arm wrapped), and how much better she looks every time we see her. I hope and pray that she heals well, the pathology stays negative, and that she has learned to swallow (and maybe eat), and talk fairly well prior to starting radiation and regressing due to that. We are so lucky to have the people we have working on her, they have thus far shown themselves to be extremely competent and excellent people, not just excellent doctors. I know this would be much worse for all of us were it not for Dr. Pou's outstanding attitude and ability to take care of us and Stephanie.

It's a New Day

I woke up in the waiting room around 6:45 this morning, I slept ok, not too bad considering everything. Dr. Pou came by this morning before she went back to surgery, she said Stephanie was responsive, meaning she would open her mouth and let them look at her tongue on command, alert, and awake this morning. All very good things in my mind. I just hope the swelling in her face goes down soon so she can get rid of the trach. Funny thing, when we watch a doctor show she cringes and looks away when they insert the trach, and now unfortunately she has one, which means she'll make good use of her marker board in the near future.

The ten to eleven visit when well, although when Candy and I went to see her at first they were messing with her arm wound care system it seriously made me sick and I almost blacked out. I think Candy had roughly the same reaction I did. She had to sit down right after I did, and then she left to go get Stephanie's dad while the nurses re-wrapped the the wound so that he wouldn't have to see the wound. They were apparently having problems with the machine not pulling a vacuum on the wound to suck all the blood and goo out. It was great to see her though, she was able to nod at us and somewhat communicated with her right arm. I got to hold her index finger and thumb and she squeezed back. So far the flap is doing good they tested it again while we there, so that's good news. Paula came by to see Stephanie and that made Stephanie throw up...haha just kidding. Steph tries to smile a little bit and it's good to see that, I was right about the trach though, she hates it and it really does bother her quite a bit, but it will come out soon, the swelling has already gone down quite a bit, and that makes me hopeful about the trach coming out. I will make another post later today about the rest of the visits.

Monday, May 19, 2008

And Now It's Over

Well the day is finally truly over for everyone except James the Surgical ICU Nurse. Stephanie is asleep, and I am in the critical care waiting room discovering these couches were not quite made for someone of my stature to sleep on. There are some larger ones, but I'll be ok for the night as long as she's in the SICU. I would feel bad complaining, because the lady next to me has been camped out for four weeks now. But on to the stuff everyone REALLY cares about. Stephanie looked a lot better than what I was prepared for, in fact she almost looked like she does when she wakes in the morning with her hair (she'll kill me for saying that), only she also looked like a chipmunk with her swollen cheeks, and she kicked Angelina Jolie's butt in the puffy lip department. I once was told that during my last trip to the ER for my shoulder it made the person with hurt to see me because I was obviously in pain while they were re-setting it. I know what she meant now, because they were having trouble with the "wound bag" from Stephanie's arm and the nurse was tracing the line to look for an kinks. A part of this operation was moving Steph's arm, and I could tell by the look on her beautiful swollen face that it was not feeling good. Oh yeah, it is now one hundred percent confirmed they took the flap from her forearm, which means they used the Shark stuff to fill in the hole. I can't wait to tell her that, it will probably come right after I let her know that they saved some of her tongue.

I really can't wait for her to be out of ICU so that I can actually spend the night with her in the same room.

Heavenly Father, we come before you humbled by your greatness and might, overcome by your loving kindness and unable to deny the mercy you have shown us. Thank you for the outcome of the surgery being everything we hoped and prayed for. We humbly ask that the final pathology comes back negative on both the margins and the lymph nodes that were removed today, but if not we require your strength and love to overflow to us again and make us stronger than you have already. We pray that the flap will heal, and the blood vessels will not clot and will remain flowing to keep the flap alive and healthy. Once again we cannot adequately express our thankfulness and praise for the out come of today.

The Day is Finally Ending

We just heard from the two doctors (Pou and Kaplan). Stephanie is done, she only went 30 minutes over the scheduled surgery time, which was 14 hours. The prognosis is very good at this point, there is enough tongue left on the side to help eat and talk (though I'm sure with a lisp, but time will tell). We will get to see her soon. I'm very thankful for all the providence and all the prayers, but stop praying yet, we still have 72 critical hours to wait and make sure everything takes, and we find out on hopefully on Friday if the margins are completely clear.

It's a Hook! (aka Shark Girl Lives!)

Dr. Pou just came to talk to us and it really is the best possible situation given the circumstances. The pathology from the margins was negative for tumor so Stephanie has enough of her tongue left that the rehab should be much easier on her. This also probably means she gets to be Shark Girl which will make her WAY excited. They are working on sewing her up now and finishing the flap. This is truly a huge answer to prayer, thanks to all of you that have been today. I will probably still be the sole author or a few more days at least, so don't get too tired of me yet.

Edit: I was so excited I forgot to change the font and color.

It's Going to be a LONG Day

So far about four or five surgeries have completed in the time we've been waiting here. It's interesting to watch the people come and go, I just wish we could be some of the people going.

We got an update at 8:30, they've finished the scopes that were part of the procedure, these were done to get a much better look at the esophagus and larynx than using the nasal scopes they have been using that you've head Stephanie talking about. There was no word on whether they saw anything, just that the surgery was going well.

At 10:30 they told us everything was progressing well in the surgery.

We've had two more updates with the same words as before.

At 3:30 they started the reconstruction. We are not sure if that means they already took the flap or not, or where they took/are taking the flap from. The reconstruction will probably be the longest part of the surgery as they have to connect lots of blood vessels under a microscope and all that so the flap is healthy.

Two more updates, the surgery is progressing and Stephanie is doing well.

I will update this post as we get updates through the day.

And so it Begins

Today started off with Stephanie waking me up saying "It's four" the problem with that is I had set my alarm for 3:30. Then I found out I accidentally set my alarm for 3:30PM...oops.
So we got a later start than we were hoping and to rush around to get ready and leave by 4:35. We made it on time though and after signing some papers for the financial stuff we were ushered back to the prep room. Stephanie got dressed in her hospital gown and got some long leggings and socks out of the deal too. She was stuck twice more, once to take more blood for more blood work, and once for the IV. I got to watch Mike and Mike in the morning during all this, so I was happy. We met one of Dr. Pou's residents, Dr. Burke, and she was very nice as well, so were all the nurses that were taking care of her this morning. we were told that the surgery would take a while to actually start, maybe as late as 9:00am, but the lady just told us they had started at 7:30. Stephanie's pulse was going pretty fast this morning as I'm sure you can imagine, so the nurse anesthetist gave her some versed, which pretty much knocked her out like a light in about 3 and a half seconds. So now we (me, Stephanie's parents, and my mom) are all waiting in the waiting room, and my mom is standing four feet away from a gigantic tv that she hijacked to watch her stories because she has to get her NBC fix. That's all for now, more later.

One for the money; two for the show; three to get ready; and four to go!

Because I know most of you want to know - my “last meal” tonight was tilapia with mushrooms in some sort of cream sauce and mashed potatoes and veggies. It was pretty tasty. I had no idea where I wanted to eat for dinner tonight, and we ended up at the place we ate at pretty much by accident. We had tried to go to a Mexican Restaurant, but because we got a late start on dinner, most of the restaurants around were closed (it was only 8:00). So we had dinner at Charlie Brown’s – some little family sports bar in Prairieville. My parents came up from Luling, as did Warner’s mom and they are all staying out here tonight and going to the hospital with us in the morning – bright and early. Charlie came up after he got off work and ate dinner with us but he went back home for the night, and Paula and Dawn came up earlier in the day to spend some time with Warner and I. Paula took the dogs back with her to keep them for a while – and I really miss my puppies! It was weird walking in the house and not being greeted by them and not having to go let them out of the kennel! I told Warner they better be back here at the house on the day I get out of the hospital!

Yes. I am about as white as they come (see picture above). When Warner is tanner than you, you know you have reached a new level of whiteness that has never before been achieved by man. I just haven't spent a whole lot of time outside, and I have a feeling that is not going to change much this summer. Anyway, that picture was taken tonight and will probably be the last picture of me before the surgery - unless someone takes some tomorrow morning.

I just had my last drink until after the surgery, or until I’m allowed to put things in my mouth again. I had gotten up and had a glass of water and then I wondered what in the world I was doing just drinking water, when I won’t be able to drink anything for a while – so I went out in the kitchen and got a glass of orange Gatorade. Hey, it’s better than a glass of water. So now it’s 12:01 and I can not eat or drink anymore which means tomorrow morning when I wake up, I will be starving, not the “oh I’m a little hungry here’s a banana” kind of starving, but the “you better watch out, I’m drooling from the mouth and I might just eat your arm off if you stick it anywhere close to me” kind of starving. It never fails that when I am told I can’t eat that I get super hungry, but when I can eat I can go all day without getting hungry!

So, I’m getting more anxious about getting this over with as the time gets closer. The only thing I’m curious / nervous about is the anesthesia. Since I haven’t ever been put out, that I can remember (the times when I was a baby don’t count), I really want to know how it all works and what it is like. And of course, I’m not looking forward to all the pain after – I just hope they keep me flying high on those pain meds (as long as they don’t make me too nauseous).

So I guess this is my last post for a while. You’ll be hearing from Warner until I’m back up and forming coherent thoughts. Keep us in your prayers tomorrow and for the next little while throughout recovery. This surgery is just the first step in a long process. Ugh, the alarm is going to start buzzing at me in about 3 hours! Goodnight!

Sunday, May 18, 2008

05/18/2008 1800hours H-11

Well here it is just 11 hours prior to showing up for Stephanie's surgery, and oddly enough, we're doing okay. Like Stephanie said we're ready to be over with it and at least start recovering. I like the idea of finally taking action against this thing, no more doctor's appointments where we talk about options and risks and everything else, but finally they will actually remove the problem and begin killing any residuals. I know the recovery from surgery will be tough on us, and more so the radiation and recovery from those treatments, but I really do feel like that will be easier. The light will be visible at the end of this long dark tunnel at least.

Today was the first real indication that we are actually going through with this though. Paula took our dogs to stay with her while Steph is in the hospital. A few minutes later we went to get Starbucks down the road, and when we came back in I thought something was wrong since Ruekie didn't charge down the stairs at me.

I will keep everyone updated on here throughout the day tomorrow, all your thoughts and prayers through the day will be greatly appreciated, although I probably won't answer either of my phones tomorrow either.

Just Because You Have Cancer - Don't Think I Won't Hit You!

The above quote is a loving quote from my brother from Friday and I can promise you I did absolutely nothing to provoke him in any way whatsoever! (He didn't actually hit me, so don't worry, I would have hit him back anyway!) So...on Friday, Charlie (my brother) came up and we spent the afternoon hanging out in Baton Rouge. We did some shopping, went to Best Buy, and had lunch at Perkins Rowe. We checked out the Fresh Market that is at Perkins Rowe, and it’s like a mini Whole Foods, and I love Whole Foods. I bought a couple of movies to watch in the hospital and found tons of clothes that I would have loved to have bought, but since I have no clue how much weight I’m going to lose, I’m holding off on buying clothes for now – I know, it’s a very sad situation since I live 2 minutes from the outlet malls! My parents came up a little later in the day for dinner. Warner and I introduced them to Jason’s Deli, which we really like, but it wasn’t the hit that we were expecting. Oh well. They stayed pretty late just hanging out and playing with the dogs (because they are tons of fun to watch!).

Today (Saturday) I slept pretty late, well, I slept off and on pretty late. When you have a puppy, you don’t have the luxury of sleeping late. I would wake up every so often and take the dogs out and then I would crawl back in bed while the dogs played in the living room – hoping and praying they did not find another pen to chew up. The one thing I have not had a problem with throughout this whole ordeal, has been sleeping. I have not lost any sleep – at all. I love sleeping though, I took tons of naps in college and I still love taking naps. When I was on steroids I would wake up a lot at night, but I had no problem going back to sleep after. Even now with the surgery getting close, I just wake up to take more pain pills and I go back to sleep. Warner and I went out to Luling for dinner, and my dad bought some boiled crawfish and he boiled up some shrimp – it was quite yummie! I’m going to have to decide fast what my last meal is going to be tomorrow – I have no clue what I want. Mrs. Susan (Warner’s mom) is in town now, so she can teach my mom how to play Canasta, so that when I am feeling up to it, we can all play! Hopefully she’ll keep my mom laughing this week and hopefully they’ll have a good time together.

Warner and I went and bought a new cell phone today – a Blackberry! Yeah, I’m super fancy now. I don’t have internet on it, but I do have one of those fandangled keyboards to make text messaging a whole lot easier and I have unlimited texts! So, while I won’t be able to talk on the phone to any of you for who knows how long (if it works out in my favor, even if I can talk, I may never answer another telephone again in my life – just kidding) I will be able to text like a texting fool - once I’m alert enough to send you something more than a few random letters of course.

So, in about 27 hours, I’ll be at the hospital getting prepped for surgery. I’m not really nervous, just anxious to get it over with. Since I’m in a good bit of pain already, I’m looking forward to having the surgery and getting on the road to recovery. Sure, I’m going to be in a lot more pain after the surgery and it’s going to be a long road to recovery, but they have the good drugs at the hospital (and I'll be there for quite a few days!), and I’ll know it’s a good kind of pain and I’m looking forward to getting my t-shirt!!

Oh side note! Dawn is going to be making a scrapbook for me of this whole crazy cancer adventure (which I’m really excited about, because I’m not going to remember much of next week), so if you take any pictures of me during the next couple of months, email them to me, or get them to me somehow so I can get them to Dawn (or just give them to Dawn). Okay, I really meant for this to be a short post, but oh well! Hopefully I’ll get one more post in tomorrow before I go MIA for a little while! Goodnight!

Friday, May 16, 2008

The Blue Dog Group...Coming To A City Near You!

The fur-kids (as Paula has so lovingly called them) decided yesterday that they wanted to start their own rock group, the Blue Dog Group. They figured two blue dogs playing instruments would be way more exciting than three blue men. I’m sure Edgar could learn how to play the zither and Ruekie could play the Dumpstulum - it would be an awesome act. Actually, Edgar got a hold of a pen today while I was sleeping and he lay down on the dog bed beside Ruekie and chewed it up. Of course by the time I woke up, Edgar had moved to a different spot, so poor Ruekie, covered in blue ink, got in a lot of trouble (the blue didn’t really show up on Edgar’s fur) - but then, a little while later, dear, sweet Edgar threw up blue (not on the carpet). Unfortunately, I do not have a good picture to show of the blue-ness, I will try to get one tomorrow.

I had my marathon day of appointments on Wednesday. They wore me out. I slept all day Thursday, except for when I got up to let the dogs up, and examine the pen explosion (which did not get on the carpet at all!!!) and I finally got up for a while to eat dinner and watch Grey’s Anatomy. I was just hurting a lot and popping lots of Vicodin because I have to talk a lot during my doctor appointments and that irritates the sore.

My first appointment was with Dr. Ory, the dentist, and this was in the morning. I got my fluoride trays and he gave me the molds of my teeth that were made from the impressions. Since this was my first time having impressions done, I was totally psyched about the molds!

My second appointment was with Dr. Pou and it was to do a lot of pre-op stuff. I signed lots of papers giving her permission to cut me up, as long as she promised to put me back together (As long as she didn’t put the cancer back in). We went over all the risks of the surgery and we talked about everything they were going to do me. Surprisingly, I’m okay with it all. Last week when I first heard everything, I was having a tough time with it all – but over the last week I’ve really come to terms with the surgery. The thought of being put under anesthesia and everything they are going to do to me still freaks me out, just because I have never really had any type of surgery in my life (I had a cyst removed above my eye at 6 mos and tubes in my ears at 9 mos.) so I don’t really know what to expect!

My third appointment was with Mell, the speech therapist. She was entirely too happy for me and she talked a whole lot, but I guess I will get used to her. She made me eat a graham cracker so she could see how I eat now with this ulcer in my mouth – which was kind of awkward because I don’t really like people staring at me while I eat, especially right now when I have trouble eating.

The surgery is scheduled to take 14 hours, but it could take up to 24, and I guess it could take less as well. I will be in ICU for 1 to 2 days after my surgery and then they will move me to my room, complete with a water bed, wood floors, and a hot tub - yeah, not really. You can check the hospital website for visiting hours, but I am going to request that you don’t come and visit until the weekend. I figure I will be pretty out of it the first few days, so instead of everyone rushing to visit me right after my surgery when all I can do is sit there and stare at you (and probably fall asleep and drool during your visit), I would prefer it if you all came when I can actually use my marker board to communicate with you! So, it’s nothing personal, but I want to at least vaguely remember the people who come to see me! Also, please do not come and visit if you are sick or have been sick recently. I do not want to take any risks of getting sick and complicating things since my surgery is so extensive! I want to have the quickest recovery possible and there will be plenty of time to visit me in the future - I won't be going anywhere too fast for a while!

Tuesday, May 13, 2008

The Many Adventures of Shark Girl

That's right, if I have a radial forearm freeflap (that's the technical term) I will have a layer of SHARK CARTILAGE put in! Since my tendons in my arm would be exposed, and they can't put the skin graft down directly on top of the tendons without the graft and the tendons possibly sticking together, they put a layer of shark cartilage and something else down first and put a hydro-pack on top of that for a week or two and then they come back and do a second surgery to put the skin graft down on top. How cool is that!??! But it is only if they take the graft from my arm and not my thigh, which they will decide in the operating room. Maybe they will feature me on Discovery Channel's Shark Week. I can see it now: "Part Woman, Part Shark, Medical Phenomenon." (except not really because this is a "routine" procedure - there's that routine word again).  So yes, this is one of the most exciting things to come out of this whole situation! 

Today I went to the OBGYN and I'll spare you all the details except for the fact that I went to this guy because he is my mom's doctor. I had NO clue that he was the guy who delivered me 23 years ago. Talk about being a little awkward because this man has the most amazing memory EVER. 

Tomorrow is marathon doctor appointment day. I have appointments at 9:00, 2:00, 2:45, and 3:30. That is going to wear me out, if for no other reason than that I am going to be repeating myself at every appointment. I should just schedule one big appointment and we can knock out all the appointments at one time. So, I will update again tomorrow! 

Monday, May 12, 2008

Wilson Never Does Anything

Except talk to House that is. It would be easier if this were an episode of House. On House the medical mystery is never cancer (except the one time with the huge guy that had lung cancer and nobody thought to check because they were convinced he was sick due to his weight, he ended up being told he wasn't going to make it much longer, so maybe i should be more selective about which House episode we are in). Regardless, House is always over in an hour, or sometimes two, and that would be nice. Come to think of it Grey's Anatomy, which is at least about surgery (ok soap opera surgery) is generally over in about an hour, though ABC likes to make the episodes an hour and three minutes, one lesson learned the hard way with DVR. There are never surgeries that take anywhere from eight to twenty-four hours, with doctors working in shifts to stay rested. So where's the Grey's episode where no-one sleeps with anyone else, and a team of somewhere around three or four surgeons works around the clock removing and replacing a part of a twenty three year-olds tongue? Probably not interesting enough, although the reconstruction part of the surgery is really cool as it was explained today by the plastic surgeon. If they take the flap of skin and tissue from her forearm we won't have to worry about cancer there. Guess what they fill it in with to make me say something so brash??? 5 points to the person that answers correctly, points can be redeemed towards free airfare, point value is one penny per point, to be paid on arrival via charter jet to our doorstep. The answer will come tomorrow I'm told, so you should wait anxiously on the edge of your seat for it.

Shifting gears, I'm convinced that even though I have a blue-tooth, it is the technology that will bring about the fall of humanity as we know it. Today in the waiting room a larger lady that was in a wheel chair with a broken leg came in. She had her daughter move a chair for her so she could sit and not block an aisle. It was at this point what shall be known as the demise good ol' common courtesy began.
Lady (shouting): Hello! Hello! Hello! Can you hear me? Blah Blah Blah. Hello! Hello! Hello! Are you there? Blah Blah Blah Hello! Hello! Hello!...

You get the idea I'm sure.

Shifting gears again, Dr. Kaplan was a very nice person, and probably the second youngest of the doctor's we've met so far. Seeing as how this was a plastic surgery center he had a flip book of before and after pictures from surgeries that have been done there. He took a picture of Stephanie's tongue an I told her it would be pretty rockin' if she made it to the flip book because the lesion would probably scare the bejeezes out of the person looking through the pictures.

No new news today, Wednesday is pre-op preparation day and meet with the speech therapist day. we will be told exactly how close to the crack of dawn our presence is required at the hospital and hopefully get our insurance stuff squared away as far as allowing Stephanie to be admitted.

Sunday, May 11, 2008

Home Movies and A House Full of Dogs A.K.A. I Really Need To Come Up With Better Titles

I try to stay as positive as I can on a daily basis. Obviously I do get depressed from time to time, but for the most part I know this is all happening for a reason, and I just keep telling myself that. I know that God is not going to give me anything that I can’t handle with His help, but sometimes I wish he didn’t have as much trust in me. Ya know? Sometimes I wish He saw my faith even simpler than it is, and was like, okay, here’s the deal, I’m not going to give you more than you can handle today, so today’s challenge is that you are going to stub your toe. But I guess it is reassuring that He sees me as capable as handling such a life changing event. I don’t know what gave Him that idea, but I guess He can see more in me than I can see in myself, and that motivates me, to know that no matter what, I will get through this the way that He has planned, and that I will be able to rejoice at the end of it.

Okay, enough of my emotional side. Ife – I don’t know if we’ll make it out to dinner before I have my surgery so I don’t know if I’ll be able to write about you on my blog! Gordon – continue to look for some books for Warner, I think he’ll be disappointed if you can’t find any. I’ll have to buy him the big pack of crayons (I did look at Wal-Mart last week for coloring books, but for myself, and could NOT find a single one anywhere!).

Edgar continues to bewitch everyone with his cuteness. We spent the night at my parent’s house on Saturday night and it was Edgar’s first time to meet the Bassets. Maggie was none to thrilled (she’s a moody old lady), but I think Eliza was excited to have a dog around that is her size (yes, our monstrosity of a puppy is the size of a full grown basset hound). Edgar was a little lost and pathetic this morning when Warner and I decided to sleep in and let my mom puppy-sit – apparently he sat in her lap whining. Speaking of little, sweet, innocent Edgar, as I am sitting here writing this, he just let out a very loud burp. Anyway, all four dogs played hard all day, so I’m hoping they will sleep well tonight!

My dad got out the home movies this afternoon and we watched some from my 7th birthday and my 1st birthday and a few other milestones in between. Let’s just say I was a cute kid! I was really worried that dance recitals were going to make an appearance, and that’s something even I should not have to relive - but they stayed put up on the shelf, thank goodness. My brother was pretty funny as a kid – he loooooved presents and did not really care what they were, just that he had more to open! It was pretty entertaining!

For those of you that think I am a good writer, please pass this along to all the English teachers that ever taught me – not a single one of them was ever pleased with my writing skills. Unfortunately, it was probably one of my least favorite classes in school, so I guess I never really tried to hard.

I will leave you with a picture of my beautiful smiling face (without make-up, so no judging!) I also really need a haircut as well! But hey, Edgar is pretty cute!!!

Friday, May 9, 2008

Now I'm the One That Should be Sleeping

Well here it is a little under six hours before my alarm goes off to tell me to go to work and for some reason I am wide awake. Today was another tough day for me as I had to make a bunch of phone calls to cancel stuff we had planned. There was the trip to Tulsa in May, LASIK for me in May, Stephanie's trip to Texas for the family reunion in June, and our trip to Washington in August. Yes I had to cancel stuff all the way out to the end of August, something most of the people on the phone with me didn't understand. Well here's the skinny on that for those of you that are wondering, and that keep asking when we will visit (no names...Slayton). As I said before, Stephanie will have the Surgery on Monday the 19th, and be in the hospital 7-10 days afterwards. 4-6 weeks after the surgery she will start radiation treatments. These treatments will be five days a week (Monday through Friday) for 6 1/2-7 weeks. That puts the end of treatment out possibly 13 weeks from May 19th, or the end of August, and right now we can't really tell when Stephanie will be feeling up to anything.

Thank you all who have been commenting, your comments have brought us hope and made us laugh. Thank you to those that call as well, eventually we will call back, but for the time being we probably won't; however, we enjoy listening to the voice mail as well. Above all your prayers mean the most to us. As hard as it seems to see it, it is impossible to deny God's hand in these circumstances.

Thursday, May 8, 2008

I Really Should Be Sleeping

So, Warner has updated everyone on the latest news, so instead of repeating things that he just wrote about, I’m just going to give you all a few random facts!

  • Official Needle Stick Count: 4
  • Number of vials of blood taken: 6
  • Official Nose Scope Count: 3
  • Number of X-Rays and Scans: 3
  • Total Number of Doctors I will have met with by March 14th: 8
  • Total Number of cakes I have bought and eaten: 1 ½ (I am buying another one tomorrow, the second one was not so good)
  • Total Number of puppies bought: 1
  • Total Number of time I have cooked a meal since my diagnosis: 0

So, the list wasn’t as long as I thought it would be. I’ll just add to it later. Here are all the different doctors I have seen / will be seeing soon: ENT / surgeon, radiation oncologist, medical oncologist, dental oncologist, speech therapist, dietician, obgyn, and the plastic surgeon. Crazy - I was the one who always hated going to see the doctor or dentist when I was younger (and when I was not so young, like say, oh a few months ago) and here I am with a million of them!

The 411

Yesterday was somewhat of a freakout day at the doctor. We started at 8:30 with the dentist, Dr. Ory, he was very nice and very young. Small World though, he comes from Laplace and most of his family has at one time or another worked for Marathon or one of the other plants in that area. Smaller World, he spent a little less than a year after Katrina practicing out of a Dr. David Brannen's office in Luling , who just happens to lead worship at the church Stephanie went to growing up and that we've been attending while in the area. Stephanie doesn't need to have any teeth removed prior to radiation, however if she ever has to have one removed after radiation she will have to go through a hyperbarric preparation (because the bone in her jaw won't heal) for one month to the tune of roughly $40,000. I think we will try to time tooth extractions so that there are always at least two that need to be pulled. That or maybe we just won't have any of her teeth pulled.

Once we were done at the dentist we went over to the medical plaza where Dr. Pou has her office. After our last experience here I was very surprised to walk into an empty waiting room. This is the point where we were instructed to commence freakout. Dr. Pou came and explained what she and Dr. Fields had talked about and how they had talked to a colleague at MD Anderson. She re-examined Stephanie to make sure nothing had changed (that means another scope shoved up Stephanie's nose). Nothing had, so we began to go through the surgery and more importantly the potential risks. She drew us a diagram of Stephanie's tongue and where the tumor was, and the margin she would take in order to give her the best shot of removing the whole tumor at once. She then drew another diagram of what would be left of the tongue. Dr. Pou explained that she would remove either a portion of Stephanie's forearm or have a plastic surgeon come in to remove part of her thigh (depending on how much tissue they need), to fill in the hole. If this is the way the surgery goes Stephanie will be able use her tongue with little to no problem in her speech (meaning she'll be understood 85-90% of the time) and has a chance to not need a feeding tube for the rest of her life. If the margin Dr. Pou takes reveals tumor cells in it, she will have to take more out. If this happens Stephanie will only be able to move her tongue up and down from the back (the portion of the tongue you can't see) rendering her speech to be that of a person that is tongue tied. We didn't talk about the feeding tube if this happens.

Stephanie and I talked and cried over everything we had just heard and she has decided to go through with the surgery as it has the greatest chance to remove the cancer and be done with it. She is determined to not have the feeding tube and to learn to eat again as soon as possible. We then went down to have the pre-surgery blood work done, this was painless, well I thought so. Stephanie had to fill up four or five vials of blood, and then have an x-ray taken of her chest.

The surgery is scheduled for Monday April 19th. These past couple of days have been some of the hardest yet, I think because of the reality of everything hitting home.

This is the day the Lord has made, I will rejoice and be glad in it.

Tuesday, May 6, 2008

The Cooties Are Contained

I guess I should put this first: I did not light up like a Christmas tree in my scans. Dr. Fields told us today that according to my scans, my cancer has not yet spread to my liver, lungs, or brain! So that’s good news! The scans did not show anything on my lymph nodes either, but that’s not to say that it is not there because it would be super small – but that’s what the radiation is for, getting rid of the microscopic cooties. It is pretty “routine” (whatever routine means) to have some lymph nodes removed as a precaution, but I am going to see what Dr. Pou says about that tomorrow.

I met with the radiation oncologist this morning - bright and early. We got the rundown on radiation, the good, bad, and the ugly. The cancer center is pretty nice and everyone there was super friendly – which I’m sure is a prerequisite to work in a cancer center – I mean, most of these people are having bad enough days as it is - all you need is a grumpy receptionist to push you over the top. We met and talked with Dr. Fields for a while, he will be my radiology oncologist and once radiotherapy starts, I will meet with him once a week. Oh, radiation will last 6 ½ to 7 weeks and it will start 4-6 weeks after my surgery. He was very to the point and down to business – which seems to be theme with my doctors. He examined me poked around in my mouth, and stuck the scope down my nose without any numbing stuff but it actually didn’t hurt – and this time I got to see! Yeah buddy, bet you can’t say that you’ve seen down your nose!!! They had a TV set up to record the “show” and take some pictures. As Dr. Fields was putting the pictures in my folder, I made him show them to me and I got to see my voice box and my esophagus and down my throat – it was pretty neat! Warner just watched the light in my mouth the whole time!

Dr. Fields brought in another radiation oncologist in case he would ever need to fill in for him and I really did not like this guy. Dr. Fields was very gentle and reassuring and did not cause me any pain even when examining my mouth. This guy, when he was examining my mouth was very rough and pushed very hard (I almost threw up on him when he stuck his finger too far back in my mouth) I gave him several dirty looks and he kept apologizing the whole time he was examining me – seriously, don’t apologize, just don’t hurt me, obviously you aren’t sorry! I just did not like him - and I am still hurting tonight from his little exam. My favorite part of all my exams so far is when they are checking your lymph nodes in your neck because you get a pretty nice neck massage!

I will hopefully find out when the surgery will be at my appointment with Dr. Pou, tomorrow at 10. We will go over the treatment options and then I’ll have some decisions to make. I also have a dentist appointment at Mary Bird Perkins at 8:30 with Dr. Ory to make sure all my teeth are healthy before starting the radiation because the radiation will be very hard on my teeth because I will lose most of the saliva in my mouth – and I will probably permanently have a dry mouth. I will have to fluoride treatments every day for the rest of my life once I start radiation. I have to meet with a medical oncologist at some point just to discuss chemo options in case it is ever necessary and just to make a connection there.

I met with the dietician this morning as well. She was really nice. I got some free samples of Boost Plus and some other brands to try before my surgery so I know which ones I like because during radiation they will be the bulk of what I am eating. I am not allowed to lose more than 10 pounds once I start radiation – this does not count any weight that I might lose during the surgery and recovery. If I lose more than 10 pounds I will have a feeding tube in my stomach – and they will have to put that in with me kicking and screaming, so I will not be losing any weight once I start radiation (no promises after the surgery though)! I will also be eating around 2600 calories a day during my radiation therapy and right now I’m supposed to be eating 2100-2400 calories and a ton of protein to bulk up for the World’s Strongest Man Competition surgery! This will be the only time in my life I will be excited about gaining weight!

I am working on training Julie at work – which has been interesting. I’m teaching her how to do things that I barely know how to do myself! Not to mention I am taking my pain pills around the clock because it keeps me from getting the hung over feeling and it keeps me from hurting as much. So, imagine me, on pain pills, trying to teach someone how to do my job that I barely know how to do. Yeah, it’s a lot of fun! No, it really is going well.

Edgar is adapting well. He is Ruekie’s little shadow and he whines if Ruekie is not around. He is still sleeping all night, and he slept from 11-5 last night! Sorry this update was so long! Hope you all feel informed now! Tomorrow’s entry will probably be another long one as well! Can you believe it's been over a week since we found out? CRAZY!

Monday, May 5, 2008

It's "Reschedule My Appointments Day" Apparently

My radiation consultation appointment was moved up to tomorrow and we have to go in at 6:30 in the morning!!!! Did they not get the memo that I am NOT a morning person and that I really like my sleep? The doctor has appointments in Hammond all day but they wanted to make sure I got in my consultation before my surgery so we are meeting super early. I have my doctor’s appointment to find out everything else, on Wednesday, and it was moved back from 8am to noon. I guess we have been waiting this long, 4 more hours won’t kill us. I’m just getting to the point where I just want it all to be over with – the anticipation is absolutely killing me.

Edgar has been great so far. He has only pottied on the carpet once (the night we brought him home) and he has not woken up at night, even when I have to take more pain meds! I was up at 6:30 Sunday morning with him and 5:30 this morning, which is early, but I was awake both times, so it wasn’t a big deal. And I don’t have to entertain him – that’s Ruekie’s job and they played so hard this morning. He is learning to sit and he knows how to kennel in Ruekie’s kennel when you tell him too, even though he doesn’t like it very much and he pouts. I shall leave you with a picture of THE EARS! Prepare to fall in love! They kiiiill me!

Saturday, May 3, 2008

Contrary to Popular Belief the Cancer Has Not Spread to My Brain

Everyone say hello to Edgar! He is the latest addition to the Bradley family, and he is absolutely adorable! And oh the ears! Those ears kill me they’re so cute! Now, I know you all are thinking we have totally gone off our rockers and that’s okay. We have. I’m allowed to make a few irrational decisions, right? For my own sanity at least; plus, we had already talked about getting another dog, and I wanted to get one while I was still feeling really good. So you can think what you want, we already know we’re crazy!! He is full blooded German shepherd, 10 weeks old, and 21 pounds. He was the calmest one out of the four they had, and he was also the biggest. And have I mentioned the ears? I absolutely love the ears!!

Today was pretty uneventful. I slept in quite late because I took a pain pill when Warner left for work. And then I braved Wal-Mart after lunch and bought myself a green marker board and a few magazines for after the surgery - and brightly colored markers for my green board. Oh, and I bought another cake because there is not much time left before the surgery and my goal is to become so sick of cake that I won’t want it later (this plan is not working out so well as of yet). Warner and I headed out to Mandeville after he got off work to go pick up Edgar, so that took up the whole evening.

For everyone who was looking forward to seeing us at church in the morning - I’m going to apologize for not being there. We decided it would be best if we spent the day at home relaxing and my parents are going to come up and have lunch and spend the afternoon with us. So, I’m excited about them coming up here, and Warner is excited about getting to sleep in some tomorrow (I already volunteered to get up with the dogs).

In other news: my calla lily finally decided to bloom. I wasn’t sure if it was going to or not, but I’m very excited that I got to see at least one bloom from it!

Friday, May 2, 2008

Take No Prisoners and Leave No Leftovers

So that is my new motto. I figured, since I will be on a liquid diet for so long, and then I’ll be on soft food, I’m going to put on some weight right now by eating whatever I want. The past two mornings I’ve had cake for breakfast – and it’s been soooo good. I think I need to go buy another one so I can continue this trend for the next week or so.

Yesterday was pretty uneventful. I did have a hard time in the morning from the pain pills I took the night before. I just don’t do well on medication. I took one Wednesday evening, and then one before bed and one in the middle of the night and Thursday morning was mostly a blur. I was pretty dizzy and nauseous for a few hours. Then Dr. Pepper came to my rescue. It was amazing how quickly the caffeine helped – I was a new woman. Warner and I had pizza for dinner and then there was a party at our apartment clubhouse, so we went down to check that out. We watched Grey’s Anatomy, I did some cancer research online, and we went to bed.

Today I was ready for my pain pill backlash, and I grabbed a Dr. Pepper before I even sat down at my desk – and what do you know…I was fine ALL day! I received a call from the radiology department at Mary Bird Perkins and they scheduled me for a consultation on the 14th. My radiation oncologist there will be Dr. Fields. You can read all about him on Mary Bird Perkins’ website: .We called Dr. Pou to see if they had scheduled my surgery yet, since we had heard from the radiology department we figured some sort of planning had taken place, but she said they had not, and she wasn’t sure why they scheduled my appointment so far away. So, we still have no clue when the surgery will be – but we do know that I will be having radiation therapy or at least we are pretty sure since we are scheduled for an appointment.

Tonight we are going to go see Iron Man – it has been way too long since we have been to the movie theater. I’m going to go to Barnes and Noble and buy a journal as well – just for me to keep personally. I also have to go buy a marker board and some markers for after the surgery. I’m thinking I need the scented markers. I’ll be high enough on pain meds, I won’t need the help of the markers.

I’m going to keep track, to the best of my ability, as to how many times I get stuck with a needle! Obviously, when I’m in the hospital for my surgery I’m going to be so out of it that I won’t care, but leading up to and after the surgery I’m going to try and keep a running tally of the needle pricking. So far the official count is 3. Not to bad I guess. One IV, one shot, and blood work.

Keep the book recommendations coming - Warner is going to have a lot of time to read over the next few weeks. Do you think they would let him set up his XBox in the room?

Thursday, May 1, 2008

A Little Bit

After running around all afternoon and watching Stephanie get radioactive stuff and drying out stuff shot into her we had this conversation -
Me: Do you want some cake?
Steph: In a little bit.
Me: What about ice cream?
Steph: Nah, not this time.
A few minutes later I get up and cut some cake, making sure I don't get Stephanie too much and ensuring she gets a gummy bear (yeah its a gummy bear cake).
Steph (with her outer lip poked out): Is that all I get?
Me: Yeah, you said you wanted a little bit.
Steph: No, I said in a little bit! Do you want my gummy bear?
Me: I got you that gummy bear special!
Steph: But I can't eat it, it's too chewy.
Me: Doh!

Needless to say I got up and got her another piece when she finished the one that was too small.

In other news I need some book ideas to read while Steph is in the hospital.

In more other news someone needs to give my dog some valium, he's freaking out over an itch, and knocking my arm around.

One last thing, this blog has become nearly an obsession for both of us, so if you read please comment, we really do check hourly (or sometimes even more often) for more comments and they are a great encouragement to us.