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!!!!!!!!!