August 31

Okay, this incision is out of control. It keeps opening farther and farther. It looks like the (5) stitches that Brendan put in are pulling out. I wish he had steri-stripped the entire thing. I think he left it open though because it was still draining. I can actually look in at the inside of my neck at this point and the edges aren't anywhere near to touching any more so how the hell is that supposed to heal?? I'm going to see if someone will help me call my ENT team on Tuesday. No way I can wait until my appointment on Friday to get this looked at. Hell, if it actually hurt, I'd be at the emergency room right now. But, it doesn't hurt. It just looks nightmarish. I gotta hope it doesn't actually do any healing over the weekend because it's going to look terrible if it heals as is!! I don't want to have to go back and see a plastic surgeon for this thing. :-(

And not for nothing. Baby doll commented that for his hand surgeries, they left his stitches in for 2 weeks each time and HE'S healthy! Here I am, malnourished cancer girl AND they're sewing up skin that has been previously radiated which they told me heals much slower than regular skin, and they took my stitches out after one week. Something just does not add up.

So, yesterday was the first full day of being home and it took some adjusting. After springing out of bed at 7:15 and buzzing around as I am wont to do, I crashed pretty hard at 9:30 am. Yep, just a little over two hours later. Baby doll pointed out that I had just had an entire week of mostly bed rest, not to mention the major surgery I had just gone through. Good points. Sooooo, the rest of the day was pretty much an hour of buzzing, an hour of resting, an hour of buzzing, an hour of napping, an hour of buzz.............

This morning I was out of bed at 6:15. Took care of the animals, took care of all my sundry personal chores....which I need to start timing out. First I eat, then I mix my power cocktail of medications, then I take some pain meds, next is suctioning and then stoma care. After that is mouth care then getting dressed. I decided that showering is such a pain in the ass that it's only going to happen every couple of days. After all the rigamarole listed above, I was once again wiped out and went back to bed for a nap. Baby doll woke me up when he arrived around 8:45.

Today was errand running day. We went to Walmart so that I could load up on tissues, Windex, gauze, non-stick sterile pads, and dog food. I also tried looking for the little sponge suckers that they had given me in the hospital when I had the PEG put in. Turns out those things are really coming in handy! No go at both Walmart and Walgreen's. While baby doll was in Walgreen's, and I awaited him in the car, I ended up finding them on Amazon. They're called Toothette Oral Swabs. They were $34 for a box of 250 of them (and free shipping). Meanwhile, Walgreen's sent us to a medical supply place just a few blocks from where we were. That place had them as well but they wanted $55 for 250 of them. My sponge suckers will be here from Amazon next Thursday. Luckily I've been hoarding the ones from the hospital so I should be okay until then. :-) The most important item at Walmart today was picking up (30) utility washcloths. I walk around with one of these hanging out of my mouth all day long to prevent leaving a slimy trail of drool wherever I go! (Did you know that you swallow automatically 2-3x per minute? Now imagine that you can't swallow. Yep.) I even have one in my mouth when I go to sleep at night, otherwise the drool running down the side of my face wakes me up. This was happening last year as well. The difference is that last year, once the swelling went down, I was simply able to resume swallowing. This year, with so much of my tongue missing, even after the swelling goes down, I'm going to have to learn how to swallow the saliva in my mouth. At least that's what they're saying. Last night I'm pretty sure while I was laying in bed, some saliva finally managed to go down on its own. And I'm still making the swallowing movements from time to time and they feel regular to me so I'm hoping this isn't going to be as big of a deal as they're making it out to be. We'll see after a few more days of letting the swelling continue to subside.

Anyway, got off on a tangent there. We hit Home Depot next where I bought another plastic cupboard to house all of my feeding supplies in the spare bedroom. Then finally it was off to Wegman's. I tried picking up my prescriptions first. I thought I only had one prescription there but they said they had two for me. And one of them needed to be mixed by the pharmacist. So, we hung out for a bit and then they told us that the one they were mixing isn't supposed to be put through a PEG and they needed to contact the doctor. So they gave us a beeper and we went shopping. Just as we were finishing up the beeper went off. It turns out the prescription they were trying to fill was for an antibiotic but I was already on one of those. So somewhere a mistake had been made. They credited back my $50 co-pay and we were finally on our merry way.

Baby doll and I got home, put most of the stuff away, and ate lunch. We started playing cards while we were waiting for my 'feed' to finish up. Yeah, guess I'm a slow eater. :-) As soon as it was done, we took a power nap. Then we put together the cabinet and got the last of the medical supplies straightened around. Phew. It feels good to finally be organized! Tomorrow it's all about cleaning this place (man, who knew short haired dogs could shed so much?!?). And then I'll be ready to settle in to some kind of routine.

FINALLY, I got to cook for my oh so marvelous man. I think I mentioned previously that he requested that I try out a burrito recipe on him. I found two recipes that I liked, but I wasn't in love with either of them. So, I took what I liked about each one and combined them. Success! Baby doll said it was most excellent! The only feedback he had to give me was that I had sprayed them with cooking spray and flipped them halfway through because the recipe says to 'brown' them. Baby doll says he likes his tortillas warm but soft. So, no spray or flipping next time.

Hmmm....what other excitement has been going on......

Even after eating my 6 cans of feed yesterday I got the munchies later on in the evening so I went ahead and had can #7. Yeah, what can I say, I'm a pig. My scale said 113 this morning which is good because I had gotten all the way down to 109 right before the surgery. I'll be setting up (or I should say Scott will be setting up for me) an appointment with the nutritionist next week. I'm going to ask her if it's safe to put the CBD's through my PEG. I'd like to supplement with those throughout the day and see if I can get myself back up between 120-125.

The insurance company called yesterday to let me know my short term disability has been approved. I started to do a happy dance up until they said it's been approved through 10/16. Say what? I don't think that's going to cut it. I have a message in with our HR Dept. at work to find out what I'm supposed to do about it.

I don't know what it is with me and this mister pump but we're having a hard time getting along. I turned it on last night and went to sleep. I woke up an hour later, used the bathroom, and checked the water level in the mister. It hadn't moved. Okay, that can't be good. It then occurred to me that the night before, I could actually see vapor mist coming out of the hose and I didn't remember seeing any when I first went to bed. After tinkering around for 10 minutes I finally figured out that a nut on the machine had vibrated loose causing there to be no pumping of air. As soon as I tightened it, I was back in business. And without going into too much graphic and gross detail, just wearing that mister for an hour is a HUGE help to my lungs. I really need to keep a better eye on what's going on with that wretched piece of equipment from here on out.

Andy and Kim are trying to rot my brain!! Last year they got me hooked on The Walking Dead and tried to ensnare me with Entourage although that's still waiting for me on my Smart TV. I haven't given it a whirl yet. This year they got me Season 2 of The Walking Dead, Season 1 of Homeland, and Season 1 of Newsroom. I'm guessing they think square eyeballs will look attractive on me. ;-P

Speaking of attractive..........not..........here's a picture of the lovely mess that I am. I actually took this yesterday and the incision looks even worse now. Can you see where the skin isn't even touching edges right above the stoma hole?? Ewwww.

So, I've been covering up. Some non-stick bandages and gauze over the incision, and then a little crocheted stoma cover that the hospital gave me.

Lastly is my leg.

And let's take a moment to talk about my leg because the poor thing has become background noise with all the rest of the hot mess that's going on. I'm able to go up the stairs in the normal manner (albeit a little slower than usual) but going down the stairs I have to go one step at a time. It's on my list of doc questions to find out if I should be doing some physical therapy for this. The therapist I saw in the hospital only gave me neck exercises which I'm currently not allowed to do because of the incision sitch but she didn't say anything about my leg.

So the hospital gave me two of those cute little crochet covers. Both of which are currently dirty. I also have some really pretty scarves that my friend T brought to me the last time she was here. I'm going to give one of those a try tomorrow to see how they work. The stoma cover has to be breathable obviously. I poked around on the web and ended up finding this website: http://www.stomacoversandtrachbands.com. She has some really cute stuff! I sent her an e-mail tonight requesting to purchase 5 of her products.

Okay, that about does me for the day. I'm off for some pain meds and then I'm going to lie down. Might watch a Kim and Andy DVD, might play a game on my iPad, might read a magazine, might zonk 3 minutes after my head touches the pillow. I'll just have to see how it plays out. :-)

August 30

Good morning!

Okay, to all the peeps who sent me 'welcome home' e-mails, texts, and FB messages, thank you AND you were right, I was wrong. A couple of you commented how much better it was going to feel to sleep in my own bed again. I wasn't so sure. I'm still leaking and uncomfortable. The bladder thing still exists (although I ordered a porta potty for next to the bed and Jamie helped me get it set up last night. Just in case.) And now I'm on a mattress where I can't find the exact comfortable incline electrically for my neck and breathing. And......


Screw all that. It was FANTASTIC!!

Baby doll and I crashed around 11:30 last night. I was up at 2:15 and actually made it downstairs to the bathroom without an incident. I then took some pain meds and decided to take a breather on the couch. The next thing I know, I woke up in a very uncomfortable position around 4:30 am and took myself back up to bed. Upon getting up there I discovered that the 'mister' that I need to wear at night had run out of sterile water. This could be a problem. The medical supply place only sent me (8) liters of the stuff and I've blown through 3/4 of a bottle in one night. I'm going to have to do some research. I know the tech guy told me that he had the mister set up at a 3.........something. I can't remember what UOM he used. Pounds maybe? He said that's what they are usually set up for and it's a UOM that dictates how much moisture is being pushed into the air coming through the tube. I have to think that might be too high. Plus I'm feeling a little, I don't know, congested? wet? swampy? this morning in my lungs. Maybe baby doll will call them for me and find out how to adjust it. The tech guy said it's definitely adjustable.

Anyway, where was I? Oh yeah. I only have (8) liters of sterile water and I blew through almost an entire one in one night. Plus, I'm pretty sure I'm supposed to wear this damn mister off and on during the day as much as possible too. Although I added that to the list of questions for doc. I can't remember what instruction I was given about it's use AND I can't remember the timing of it. Do I have to wear this thing at night for the rest of my life or just the next few months until I heal and get fitted for the valve and filter? Something tells me it's a life thing but I hate not being sure about stuff, so I'll ask.

I should also comment that between the air conditioner running to keep the room cool and the pump running to keep the mister going, walking into the bedroom sounds like walking into an industrial factory. Baby doll claims that people usually pay a lot of money to get stellar white noise like that. I was skeptical but we both seemed to sleep like logs for the most part so maybe he's on to something.

I fell back to sleep next to the man of my dreams. Which I would just like to say is a torture all on its own. I am NOT going to be up for any adult bedroom activities for a while but seeing him in my bedroom with his shirt off.......well........I had better heal pretty damn quick, that's all I have to say. At 7:15 I woke up once again and I could tell it wasn't a maybe wake up, it was okay, I'm up for the day wake up. It felt magical to sleep in that late!

My stupid human story this morning. When I was up in the middle of the night I really wanted to turn a light on in the bedroom but I didn't want to wake up baby doll. I decided that lighting a candle would do the trick. It didn't. I ended up draping a towel over the lamp on my side of the bed and then created a pillow barrier in front of baby doll's face so that he'd be protected from the ambient light. But I digress. This morning since I decided I was up for the day I went to blow the candle out. Yeah. You can imagine how well that worked. I forgot! I puckered my lips and absolutely nothing happened! Actually, I expelled air, just 4-5 inches lower than where I had expected to expel air from. Ha! I started to lift my chin to see if I could blow it out with my stoma, I imagine I can, but I was attacked by a coughing fit and didn't want to wake the man so I exited the bedroom in a hurry. If he doesn't blow it out when he wakes up, I'm going to go up and play with it.

I had just been wondering about that whole issue yesterday too. I can pucker my lips, kind of. The right half of my face isn't moving so well which is why Michelle wants me doing the exercises 5-10 times a day. But I can't get any kind of suction to make an actual kiss happen. That's going to be a serious bummer if my kissing days are over. I decided yesterday that today I'm going to start a log book for Michelle. I'm going to record when I exercise, take notes of anything of interest, and record any questions I come up with for her. She's going to be tickled about it, I can already tell you. She said that she usually just gets to practice the swallowing therapy of her expertise, not the speech so she's blown away about working with me. I'm not sure I've ever seen anyone so excited about their job. Have I mentioned I love her?

I have to go through and make a list of action items today to start working on. I'm supposed to have someone call our local emergency services sooner rather than later to let them know that there's a "neck breather" at this residence. And yeah, that's exactly how the paperwork stated it. In quotes. "Neck breather". Sheesh. Anyway, it helps the medical personnel know that about someone because if they try performing CPR on my in the usual manner, well, I'm screwed.

Okay, breakfast just completed. My hot man should be rousting from bed. I have no idea if I have anything in the house to even feed him. I'll have to go look. I'll probably check back in with all of you later today as I won't be able to contain my excitement about day 2 of freedom and healing! Ciao!

August 29

Okay, time to catch things up. I was pretty darned miserable yesterday. I had to ask 4 people to NOT come visit me simply because I was in such a rotten mood. And to top it off, I had another new nurse, Bonnie, who was the worst one yet! (Note to Judy, she was very good at her job, it was simply a personality clash.) She was just way too handsy, constantly getting in my face, invading my personal space in a way nobody else had, not listening to understand. And man, she totally sucked at Charades. Ask baby doll. I don't think he was impressed either.

And let me tell you, this no talking thing seems to baffle a lot of people. Everyone keeps asking me questions that have a choice. Do you want the pillow on the chair or in the closet? At which point I have to stop what I'm doing to write out an answer. You'd think they could keep it at one choice and then if the answer was no. Offer me a different choice. I then tried to get smart and figured I would hold up one finger for option 1 and two fingers for option 2. This didn't really seem to work either. If my choice was one, then people thought I was asking them to wait a minute. And then there's the people who get impatient when you're writing out an answer to their question. Some of them look over my shoulder and try to guess what I'm going to write next in order to hurry things along. Which is okay if they have a brain. Kunkel can finish my sentences any day. Unfortunately, not a lot of people are as smart as Kunkel. Then there are the people who hate the silence while I'm writing and they start talking to fill it and end up asking 2-3 more questions which then makes my answer take even longer. Only one more month and then I will hopefully be healed enough to get fitted with a valve and Michelle and I can get to work.

Baby doll came and played cards last night. He was the only one my battered and bruised morale wanted to see last night. He's a balm for my soul. <3

Sam actually let me sleep in until 5:45 this morning! Can you believe it?? He then took out the drain in my leg. OMFG that was uncomfortable. Then he took all the staples out of my leg. I barely felt a thing. Then the rest of the sub-team came in. Brendan, Ryan, and Priya. I handed a new list of questions to Brendan:

- I told him the whole reason the new tumor was found was because I had a continuous ear ache starting in May. I thought it would be gone once the tumor was removed. It's not continuous anymore but man, 4-5 times a day a deep ache starts up and lasts for a good 10-15 minutes. He said Priya would take a look at me at one of my follow-ups and see if they can figure out why that's happening.

- I wanted to know when I could drive again. Brendan said to give it a few weeks. In order to drive, you need to be able to turn your neck which I cannot do at the moment.

- I asked if I could shower. Why yes, yes I could. And let me tell you, the moment they left the room that's exactly what I did for the first time in 7 days! OMG! Wonderful!

- Since they can't fit me with a valve until I heal, I basically have a big gaping hole in my neck. I asked if simply wearing one of the little crochet covers would be enough until I can get fitted. I reminded him that I live with 2 dogs and 2 cats. He said it would be fine. I'm still a little worried about that one simply because I know that I'm slightly allergic to my cats. It will be interesting to see how I fare.

- I then sang Sam to the high praises about what an awesome job he did taking out my stitches. How gentle he was and how he kept giving me little breaks. I thought it would be cool to give him kudos as a lowly student to his upper management guy and I think I was right based on the huge grin on his face. I then mentioned I had promised him cookies for his stellar effort and was wondering where I could deliver them to, to ensure Sam got them. Ryan spoke right up and said any and all baked goods could be given to him and he'd see that Sam got them. Not. They were funny, standing around joshing and joking with each other. I'm going to take a big container of 7 layer bars to my next appointment for the 4 of them. :-)

So, they left, I showered, and then I waited. I still needed sign off from either Dr. M or Dr. V about going home. Dr. V finally arrived around lunchtime. He said part of my flap is looking a little gray and may not survive. I asked him what that meant. He said it depends on the location of the flap failure. Currently, he just sees a piece at the top of the flap which he said will simply slough off if it dies and no worries. If things are deteriorating further down, then we will need to assess. He said the Doppler still sounds healthy and strong so he doesn't think there's going to be a problem but he wanted me aware of it just in case. I have an appointment with Dr. M On Friday, 9/6.

Toby and Ray decided to come visit me on their lunch break which was perfect timing. They had my ass home at 1:45 this afternoon. Woo hoo! I'm free! I'm free!

It's been kind of slow going since then. I needed pain meds immediately upon arrival. I gave those 15 minutes to kick in and then sat down for an hour long feeding. I was finally ready to get up and start kicking some ass when VNS called wanting to come over. So, they did. And that was an hour and a half long appointment. All I want to do is clean this pig pen, get things organized, and do a little nesting. Is that really too much to ask??

I did finally get something accomplished. I set up what I call the Gross Command Center in the basement. It's here that I will be doing all the disgusting little tasks that are needed to upkeep my new body style.

I also started whiteboarding the tasks that I will need to keep track of daily:

And I just realized that I need to add another category to that whiteboard. They keep referencing me as being malnourished in all the paperwork so I came home with no less than 11 prescriptions for crap to boost my health. Everything from Vitamin C to antibiotics to zinc acetate to calcium carbonate. I look like a freaking drug store over here! Luckily, they are all once daily items so not really a big thing. I think it's funny though that most people slowly build up their number of regular meds over the course of years. I get mine all in one shot!

Another item for the whiteboard, or maybe just a goal list somewhere.......things I want to do over the next 6 months:
- learn ASL - I've always wanted to be bilingual
- learn to sew - it seems like more and more often over the past year this would truly have been a huge asset of a skill to have
- make an attempt at a book - yeah, yeah, about 12 of you have mentioned it now so I might as well try it. Baby doll said he had a dream where I was "gone" and he actually published a book that was a combination of my blog and our e-mails (we e-mail each other at least once a day if not more often) and he titled it "Dying for Flowers". I told him if I didn't get around to writing a book or if I was no good at it, then he should feel free to capitalize off of me in any way, shape, or form that he can, should I be "gone" of course.
- take up scrapbooking again - good way to go through memories of a lifetime and it satisfies my OCD need to organize the hell out of something with all the down time I'm going to have.


Did I mention that Jamie was home when I arrived home? I had asked him to be on the lookout for a delivery that was coming between 5:30 - 7:30 tonight. I guess he decided to work from home for the day. I can't tell you how relieved I was. Not that I've had any problems whatsoever but it definitely boosted my comfort level having him here. Plus, I had him lifting and carrying a bunch of heavy stuff for me. He's the one that brought Gross Command from the spare bedroom on the second floor, into the basement for me. He also hung the really heavy mirror you see in the picture. And it turns out the delivery guy who just left here is deathly afraid of dogs and since I can no longer talk, I could not quickly or easily coax the dogs outside in order for him to make the delivery. So, Jamie and I tagged teamed each other with the dogs and we kept the delivery man safe.

By the way, here's the bedroom that is turning into a warehouse! Sheesh!

So, I'm sitting here at my desk, quietly blogging while I administer my evening feeding. Jamie is on the chaise, doing his thing with his own technology. This is exactly how I pictured my man-cave being used. Although baby doll was on the chaise when I pictured it. I'm sure Jamie's just keeping it warm for him. ;-)

I'm so excited to be home and to be nesting once again. James Brown had it right when he sang, I Feel Good!

August 28

Holy fuck, I'm having a bad day.

Sam, the cute university student on my team, was here at 5:30 am to remove the stitches from my face, neck, and lip. It took him an hour. He was very patient, very gentle, and did an excellent job. I promised him cookies. :-)

Unfortunately, there was leakage from the left side. For those of you who were walking this path with me last year, does that sound familiar??? Although last year it was the right side. Sam got Priya, she said it was fine. So, he finished taking all the stitches out.

BTW,  Sam gave me some hierarchy scoopage. In ascending order, Priya is an R3, Ryan is an R4, Brendan (hottie red head) is an R5 which is one step below Dr. M who is my main attending.

So, Brendan stopped in to check me out. He started to milk the discharge and a good 5-6" strip of the wound reopened. Again, sounding familiar? At least he milked it before it got infected. I didn't get to it until after infection set in last year.

So now suddenly he doesn't want the drain or staples to come out of my leg. I'm supposed to take it easy today and try not to turn my neck.

Then Michelle came to see me. Nothing too new there to report other than that the valve that gets replaced every 4-6 months isn't covered by insurance and they're $250 each. Ouch!

So, Brendan was just here and put 5 new stitches in my neck and used ~20 steri strips on the rest of it. Talk about unpleasant. My day just isn't going well.

On the bright side, baby doll stopped in this morning to see me. He helped me change my bedding and got me cleaned up. I felt 300x better after that. Just having him next to me working towards a goal, even something as small as making a bed, gives me a sense of contentment and connection. After he left for work, my nurse, Linda, asked how long we had been together. When I told her 7 months she almost fell over. She said she would have guessed 7 years. She couldn't believe how tender and gentle he was with me. She said I had found one of the few good ones out there, not to mention how attractive he is, and she said I had better not let him go. I told her I was holding on as tight as I could!

The one good thing I managed today was getting Abigail to remove that nasty IV that was on my wrist bone. We went back to the old one in the crook of my arm last night. Then this morning I got Brendan to agree to take me off the IV antibiotics and am now on feeding tube antibiotics. Thank god! I'm happy to stay here an entire extra week if it means no more IV's!

I had a thought at 4 am. I've gotten a lot of different reactions to the fact that I live alone, none of which have been positive. Which, of course, pisses me off to no end. I'm not settling for mediocrity or downright unhappiness simply to avoid being alone in life. Anywho, if I decide to go the roommate route, I was thinking I might be able to advertise for a med student, like Sam who took out my stitches this morning. I can give them low rent in exchange for keeping a medical eye on me. That might satisfy a bunch of different needs!

Although I'm not sure how I would deal with a roomie like Nurse Abigail. She is absolutely the sweetest nurse (gorgeous too) but oh my goodness she's a slob! Every time she leaves my room I'm up and out of bed picking up after her! She leaves a trail of half filled cups, empty wrappers, goop on my Kindle case....sheesh! She's damn lucky she's so cute.

Okay, I'm going to see about a nap. Maybe that will kickoff an improvement in my miserable day.

August 27

Phew. It's been a hell of a day and there's a lot of info to get out there.

First of all, OOPS! I type little notes to myself as I blog so that I remember to touch on things that I want to. My notes disappeared last night, or so I thought, I assumed I had deleted them. Alas, there were some humorous e-mails and texts today in regards to my little notes at the bottom of the blog. So, just to update everyone else on the couple of items I didn't touch on yesterday, baby doll and I were trying to think of ways to use my new skills to my advantage. So, my lack of smell (although supposedly this may come back) would immedicatley qualify me as the all time winner of any fart wars I may get into, as far as I'm concerned. And Scott was wondering if I would be allowed to enter the hot dog eating contest on Coney Island since I supposedly won't choke on food now.

So, rock star, Nurse Greg fell a little in my eyes. I had a couple more accidents with my stupid urgent bladder. I was crying. It was just so frustrating and stressful. He offered diapers, I asked for a porta potty next to the bed. He said he'd order me one. Last night I had a new nurse, Stefanie. I again had an accident, cried. I told her that Greg had said he was going to order the potty and asked her to check on it. Turns out he hadn't. Stefanie had one there for me within 3 hours last night. She's now the new love of my life and the potty is working out wonderfully! Although she did make me promise to walk numerous times today. She said she'd make me go back to peeing in the garbage can if I didn't. ;-)

There was a huge entourage in my room at like 6:45 this morning. Everybody and their brother were in to see me! At one point I think there were 8 people crammed around my bed! And honestly, I can't keep them all straight. Dr Miller and Dr. van der Sloot were my original guys. Since then I also get poked and prodded by Green, O'Brien, Rosenbaum, Priya, Ryan, Alexis......plus a number of interns that hang around. Seriously crazy.

So, info is starting to blur. I believe Dr. M is still shooting for a Friday discharge. He also wants to remove the sutures from my neck tomorrow. Baby doll and I remembered to write down some actual questions for me to ask, finally. So, when Scott was here Sunday night, he yawned 4x and I felt absolutely no urge to yawn as well which is NOT normal for me. I thought it was yet another super power! But Dr. M says I should have normally yawning functionality so no idea what that's about. The second question was why the incision line splitting my face goes zig-sagging to the left but the tooth he removed to saw through my jaw is way to the right. Baby doll thought it was so that my face would go back together like a jigsaw and add more support. Dr. M said something about the bigger the piece of area affected, the faster it would heal. When I raised an eyebrow he said there really wasn't a reason behind it, it's just what he decided to to while in surgery. Um, okay. Lastly, I asked if I could use some viscous lidocaine on the gaping hole where my tooth used to be. For some reason the pain meds do not touch that owwie at all! He said no problem, he'd get something on order for me. It was funny seeing both Dr. M and Dr. V duing the same visit this morning. They usually come separately with their own group. I was happy to see them together this am.

My next visitor was Michelle, my new speech/swallow therapist. OMG. Loved her! So vibrant, and excited, and upbeat. She rocks! She spent like an hour with me and she was all over the place with info and whatnot. It turns out that the "speaking valve" they keep referring to is a tube that Dr. M placed between my eating tube and my speaking tube. I was immediately concerned that I had lost my super power to not choke when eating. She assured me that it was a one way valve that only allows air in so my super power is intact. Anyway, instead of using vocal chords to vibrate words, the speaking valve allows the eusophagul muscles to vibrate instead? Or something to that effect. And in answer to Peg's question on an earlier blog. I guess I will still sound like me but with a bad cold? I was a little surprised by that. We'll see if it holds true. Anyway, it turns out this valve continuously breaks down and needs replacing. Normally it needs to be replaced every 4-6 months. Worst case, every month but if that the case, there are things they can do to remedy that sitch. Best case, she has one patient who only needs it replaced once a year! She then had me download an iPad app called Verbally. I can type stuff in, hit speak and it will talk for me. Unfortunately my iPad's volume is impossible to hear even all the way up so I have an iPad speaker stand currently winging its way to my house. I should see it Thursday. The app is free but they have a better version for $99. Supposedely with a better selection of voices. Maybe I'll upgrade for Christmas and give baby doll something sexy to listen to. She also gave me a Type to Talk link for my iPhone and she was talking up an app called Locabulary. She said it was programmed to offer up words and phrases based on your location. So, if you're at the library or at the hospital for exampe. She said unfortunately, she thinkks the programmers have stopped working on the app which is unforunate because they were going great places. She said she knows for a fact that the Starbucks menu and Mickey D's menu are both programmed in. :-) All of this aside, I still plan on learning ASL simply because I think it would be a fun new challenge. She totally agreed with me. So, she gave me a sheet of evercises to start doing 3-5 times a day even though I'm not talking yet. She said just getting my mouth and tongue moving will be a huge help. She said that vowels are the most important sound in our language. She said there's a big difference between bat, boat, and bought even though they all use a b and a t. She said that once I really get going with my speech, I'm probably going to sound like I speak with a German accent because there are some sounds that I simply might not get the hang of, like the t-h sound. She started talking about how my current plastic collar around my stoma is temporary but she's not sure what Dr. M is going to outfit me with. Whatever it is she's going to provide me with a filter for it. Filters are good because a) they provide resistance which is what we're used to our nose and mouth doing, b) it will keep bugs from flying in there (ummm, ewww, there was a visual I hadn't thought of!!), and c) it will help keep things moist and warm which is how they should be. At this point I was getting a little overwhelmed. Her energy is amazing! So, she said her goodbyes but plans on coming back soon with props in hand and more good info. On a side note, I saw Priya at some point today and she was laughing at how excited Michelle is to work with me. Michelle thinks we're going to do great things together! Priya also commented that my cookies were fantatstic. ;-)

Next thing that happned, I was untethered from both IV poles for a while! OMG. I was so excited. I immediately rushed to the bathroom and scrubbed myself from head to toe (no shower yet, still dried blood in my hair, and not using a razor is getting problematic quickly but....). It felt so good! I even put on a pair of shorts and my own button front nightgown today. Iwas a human being! I then started rushing around the room trying to get organized because I knew I had a bunch of visitors on the agenda for today. Alas, they simply can't leave you alone enough to get anything done. The medical supply place, Upstate, had a rep there to see me. He showed me how to work the portable suctioning pump that I will be using at home and went over all the supplies they will be delivering each month and what my insurance covers and what it doesn't. My insurance actually covers a LOT. Go QED!! So, he left the pump with me and Jamie promised to be home between 5:30 - 7:30 to take delivery of a boatload of goods. I guess I wasn't kidding when I said my empty bedroom downstairs will soon be my 'warehouse' for my medical supplies. I should probably start looking at shelving....

Unfortunately, this stupid sales guy took up a lot of my untethered time and I wasn't quite ready for 
the QED girls when they arrived but all went well anyay. They brought me some beautiful fresh cut hydrangeas and I showed them the really cool speech app. Surprisingly it was Robin that suggested we try out some dirty words on it. I was shocked! They made me laugh and made me feel loved. They all wanted to see inside my mouth and had me moving my tongue around for them. Lisa asked if they had only removed part of the old flap or the whole thing. Good quesiton! I gotta ask Dr. M tomorrow! They had stopped at the house on their way to see me and brought me a much needed anil file, some new. clean blankies, and a bottle of my visous lidocaine. I highly recommend handing out random keys to your house for just these situations. Ha!

As they were winding down to leave, Kit arrived. As promised, she brought the bluetooth keyboard for my iPad. This thing rocks! It's still taking me 4 hours to type this up but now I think that's because I have so much to report, not because I'm typing with one finger any more. So Kit, stayed another hour to visit and brought me some good stories. I was super bummed to hear she's heading out of town this Friday for a week. I'm gonna miss her!

After she left, I was tag teamed by my 2 day nurses, Marjorie and Beth. They brought the dummy in and had me practice suctioning. And yeah, he had a name but damned if I can remember it and nobody else seems to know. Anywho after a couple of practice runs, I suctioned myself, it was as awful as I expected. Hopefully it will soon enough become old hat. Oh, and in case you're interested in the mechanics, I have to squirt some saline into my stoma which gets me coughing and choking and brings up any 'plugs' of crap that have formed. I then stick a rubber hose down the hole (it's like 14" long but it turns out you only thread in about 6") until it hits a barrier and then start twirling it, while causing suction, and slowly oull it back out. On the bright side, the saline usually has me coughing up most of the gunk and earlier today, I was in the bathroom, coughing on my own and brought stuff up (not while suctioning). So, my lungs seem healthy enough that I may only need to torture myself twice a day. 

No sooner was that horror show completed, the girls told me I had to move across the hall to a shared room. So we did so immediately. I'm now ensconsedvwith a roomie but I heard her doc say she could go home tomorrow so it's only for a night.

Then Karen showed up for a couple of hours and let me kick her ass at cards. Wasn't that sweet of her?? I also had both her and Kit take me for walks while they were here. Since Stefanie was so awesome to me, I wanted to make sure I kept my promise!

And lastly, Dr. O stopped by. I was in the middle of trying to get the keyboard to link to the iPad again. He immediately took a huge interest and did the manly man thing. Don't tell baby doll but he's the hottest of all my docs. I've always had a thing for redheads! Poor dude looked totally wiped out though, and he was acutally alone, which never happens. After doing the Doppler thing, he pulled over the visitor's chair and collapsed. Then we started talking. Not only does he plan on taking the stitches out of my face tomorrow but out of my leg as well. He also plans to keep me on antibiotics at home for another week. I was really happy to hear this and told him about the reinfections last year that were so horrible. He was glad I told him. He said my neck still looks pretty tight and angry. I told him it was fairly tender to the touch. He said I can take a shower tomorrow with the help of a nurse, he'll put an order in for it but I can't get my missing tooth replaced for 2-3 months. They want to make sure everything is well healed before I go messing around in my mouth. He said if I was really set on going home tomorrow he could make it happen. I told him I'd actually like to wait until Thursday when all of my supplies should be at my house. Including the porta potty I ordered for the upstairs! He was good with that. Now we need to see who prevails. Dr. O with a Thursday release or Dr. M with a Friday release. Bets anyone? My money is on a Monday release, just so you know. ;-)
 
A few other sundry items, I finally had a new IV put in so typing no longer makes my machine beep. Unfortnately it's in my left wrist, right up against the bone and hurts continuosly. Some days, you just can't win.

I'm excited to get home and start charting my neck exercises, my speech exercises, my stoma care, my appointments, etc. It sounds like just taking care of me is going to be a full time job so I want to organize the hell out of it and minimize impact as much as possible. I have more important things to take care of, like baby doll! Do you know how long it's been since I cooked for him?? The moment I'm home and get him for a night I plan on making him shrimp cocktail, stuffed mushrooms, and a big, fat steak on the grill. He had the nerve to bring a Mighty Taco cup into my room yesterday!! I'll show him.... 

August 26

Baby doll did indeed visit me last night. I was so relieved to finally touch him after a week and a half that I got a bit swampy. Like I don't currently have enough things leaking on me! Whatever. My world is once again complete. I'm a happy girl.

I didn't end up having a very good hospital day yesterday. I had a tech named Jackie assigned to me and I was seriously worried that her ineptness was going to cause me injury. She was very nice but just not very with it.

And then there's two toned hair chick, who I think might be an actual doctor. She was less than useless if that's even possible. First she scolded me for not taking enough walks. I told her nobody had time to take me. I was baffled how their under staffing became MY personal responsibility. Anytime she walked into the room, even if she saw me struggling with a hookup, she would ignore it and simply do the Doppler exam on me, giving me no assistance at all. At one point early on I had asked if Dr. M had taken a tooth because i couldn't actually tell. She told me there was no reason for him to do that. I had to explain to her why it likely had been done. She looked in my mouth and said 'nope'. The next day I worked up the nerve to put my finger in my mouth and sure enough, there's a tooth missing. Last night she asked if I've been trying to swallow my spit. I shook my head. She told I should start trying to. I gave her the universal symbol for okay, how? She said she didn't know, I just needed to work on it. Yeah, okay, I think I'll wait for my swallow therapist, thank you very much.

Okay, enough crabbing. My night finally got infinitely better when Nurse Greg showed up for the night shift. Now there's someone who was totally meant to be a nurse. He rocks that job!

My phone in my room was just ringing. I wasn't even tempted to try and answer it. Go me! Weird that they're patching a call through to room with a patient who just had a total Laryngectomy.

The difference between the hospital on a Sunday and on a Monday is really rather mind boggling. I had actually noticed this at Highland too last year. Yesterday was a ghost town, today there was all sorts of excitement. Dr. O and team were in to see me bright and early. He said my flap is slightly swollen but he doesn't think it's a show stopper. Then baby doll stopped in on his way to work to hang out for a bit. My nurse for the day, Abigail, thinks he's dreamy and super sweet. ;-) Then resident Priya came in and took the drain out of my neck. Ahhhh.... now I only have 5 attachments instead of 6. She said she was also super busy getting all my meds lined up so that I could be sprung on Wed without a lot of fuss. Woo hoo! I mentioned to her that last year my neck re-infected twice after I got home and asked if there were extra measures we could take to prevent that this time. She said they would be keeping me on antibiotics thru Wed and she seemed to feel that would be enough to prevent reoccurring infection. Then the physical therapist showed up and we walked a few laps, did some stairs, and reviewed my neck exercises. Phew! It was a whirlwind morning!

I'm now sitting here quietly waiting for Abigail to come train me on suctioning my stoma. She said I have a dummy to practice on first because sticking an 18" tube down into your lungs tends to bother people. You think?! Meanwhile, I know they have Rescusi Annie for CPR training, I wonder what this one is called...

Okay, I just took a 10 minute doctor break. Dr. M just stopped in to check on the swelling in my flap. The bastard purposefully stuck a needle in my mouth to make me bleed! He said the veins looked dark which could mean too much pressure is being put on them but he said that I bleed appropriately when poked so he thinks it's just the swelling in my face causing the darkness, which is temporary. He noticed me using the iPad and said he was going to send Michelle, the speech therapist, up to see me sooner rather than later because she has an awesome iPad app that converts typing to voice. Meanwhile, he gave some different info from this morning. He wants to have me attempting to eat by Thursday or Friday so that they can spring me by the end of the week. I should know this game of mis-matched info by heart, by now. :-)

What I could really use right now are some pain meds and a nap. I only slept about 3 1/2 - 4 hours last night.

I finally remembered to pull out my Boogie Board today. It's a $20 electronic writing tablet that doesn't kill trees when I communicate. Everyone loves it! I'm the most popular kid on the block! It would seem none of these kids has seen one of these so they all want to play with it. It makes me laugh seeing doctors and nurses get excited by something so simple.

So, my funny to end with today. I asked baby doll if he could bring me a hair band because my pony is currently up with a rubberband which is going to snarl something awful. He showed up this morning and said he had an Aerosmith CD sitting on the front seat of his car that he totally meant to bring up and hand to me. He then handed me the type of hair band I was actually requesting. I'm not sure I could have found a dorkier guy on the Internet even if I had tried. ;-p














boogie board
Hair bands, Aerosmith
Farting contests
Hot dog eating contests

August 25

My tiny, non-existent veins strike again. After three very painful attempts, they managed to get an IV in but it's right at the crook of my elbow (right arm) so every time I move that arm, the flow of antibiotics cuts off and an alarm sounds. I tell you this because I will be typing this entire blog with the middle finger of my left hand which I can only guess will lead to a ton of typos so I'm apologizing ahead of time.

So, here's what's going on. Dr. M, Dr. V, and a red headed doc, Dr. O have been visiting regularly. My flap is alive and well. They seem to have fun using the Doppler thingie on it. Dr. O says he thinks they will be sending me home on Wed. or Thurs. of this week. He said I will need to be taught how to suction my stoma. The stoma being the big hole smack dab in the middle of my throat. He then expects me to have a weekly appointment with Michelle to work on speech and swallowing. It sounds like they would normally try to have me eating before leaving the hospital but since I'm already set up with a month's supply of feed at home, he'd rather get me beefed back up for a few weeks on that stuff first.

I've tried watching the "How to live with a Laryngectomy" video twice now but I can't seem to go long enough without an interruption to finish the darn thing. I think I have the basic gist of it. My nose and mouth are no longer connected to my lungs, just to my stomach. I am only breathing through the stoma. Swimming is forever off my list of things to do. No big heartbreak for me since I've never been a fan but it definitely puts a crimp in baby doll and it's cruise activities. I believe we had booked a catamaran sail, a powerboat excursion, as well as a foray to a water park. I wonder how he would feel about canceling the cruise and heading to Vegas instead.....

There is a special collar for me to wear in the shower so that I don't drown myself. As JT mentioned, Dr. M installed a speaking tube already. So, I either cover it with my finger to talk or they fit it with a "duck bill" which simply allows speech. I haven't got the scoop on that yet. Dr. O says I'll be wearing an air tube for a while or forever. I can't remember which. Maybe just the first 3-4 months is what he might have said. Your nose and mouth naturally warm and humidify the air you take into your lungs. I can no longer do that so an air tube will do it for me to begin with anyway.

The video, I would like to note, was made back in the 1960's. It's in black and white and the clothes these people are wearing are...well, not of my generation, to be polite. To the good, they have people talking using a number of different methods. All of whom are men over the age of 65 I might add. To the bad, the interviewer was asking some FAQ's and I had a very difficult time understanding the answers. I got the no swimming thing, and no bowel movement trouble (how the hell that question made the list is beyond me!) but there was a question about exercise that I missed the answer to. I think I might have an excuse to stop running 5k's though. Something about not being able to regulate my breathing maybe? Although I DO remember one guy bragging that his sex life is better than ever so some exercise is obviously okay.

I'm not likely to have much of a sense of smell anymore but there's no longer a chance of me choking on unchewed food. So, I guess I can breathe and eat at the same time unlike the rest of you mere mortals? Hey, it could be a valid super power.

Basically, I'm just winging things as usual. I'm a learn as I go type of gal.

So I'm currently not swallowing what builds up in my mouth. Sometimes I bite a piece of gauze to let it absorb it. Sometimes I suction it out with a tool my night nurse, Greg, set up for me. I'm not sure if I'm not swallowing because there's still too much swelling or because I don't know how to swallow yet. Guess I'll figure that out with Michelle.

Getting old seriously sucks. Twice now I haven't hit my call bell soon enough and have only had half my wires detached before having to grab the garbage can and pee into it. Yes, I just admitted that in public. I'm sure I'm not the only woman out there starting to get urgent bladder syndrome. :-p

My buddy H paid me a visit today as well as baby doll's sister, Karen and her hubby Scott. Not being able to talk is really hard. If anyone else decides to pop-in, come prepared with wild tales of adventure to entertain me with. Or like Scott, amusing videos of your pets. :-)

Baby doll made it home safe and sound. He'll be visiting me later this evening. And even better, he will hopefully be arriving with Puffs in hand (the non lotion ones cause I think they're slimy!). You would think hospitals would stock something other than sandpaper for delicate noses. H even went to the gift shop to find something slightly better and was unsuccessful. Hmmmmm, new business venture, opening small kiosks in hospitals to sell people what they really want. I smell riches....

August 24

Hi. It's me. Back from the dead. Or at least I feel like that's where my latest visit was. JT came in with me this year and got to see a little more of the circus than normal. Heck, even I got to see more than normal. Last year I was asleep before we even left the hall. They couldn't do that this year because of my breathing difficulties and placing the tube to put me to sleep. So I got a lovely view of the big metal surgery room which I could have lived without. Waking up sucked as much as I feared too. They DID have Ativan on hand for me, unfortunately combined with the anesthesia and pain meds it kept stopping my breathing which was scaring the crap out of them. So, instead I've been living with some anxiety and they've now been worried about my ongoing elevated heart rate. Just can't win.

The nurses here are very sweet. I've been up and walking around, at least to get to the bathroom. My leg is in rough shape as well as me neck, face and tongue. Everyone keeps telling me how great I'm doing though and since I have nobody to compare myself to this year, I just have to take their word for it.

My excitement for today is a visit from Kunkel and watching a video about learning how to live with a laryngectomy. Now I'm off for another nap. :-)

Quick Update

JT: I went to see Q real quick a short while ago.  She is in a "step down bed", whatever that means, for the night but then she should be moving on to another room.  The doctor came by while I was there and it sounds as if she MIGHT be able to eat again in the future, which would certainly be cool.  All in all she looks pretty damn good, if a little sleepy for some strange reason....  She'll be in the hospital for 7 - 14 days.  I won't have any more updates so hopefully Scott or Q can update soon.

It's over and she's recovering!!!!

JT: I just talked to the doctor, and the people on the call list, so here's the scoop you've all been waiting for....

Dr. M said the surgery went smoothly but they did have to remove the voice box.  The cancer was much more extensive than they could see before with a lot of small nodules.  There were some hidden under the left vocal chord, which is why it was paralyzed.  He's confident that they got it all but it is cancer so of course there are no guarantees.

The bad news is that they installed some valve and she has enough of her tongue that they can teach her to talk again!  So no peace and quiet for us....  I'm sure it will take awhile for this to happen and she won't be singing, I hope.  But be prepared....

The doctor said that she is alert and has a smile on her face.  Her only complaint is that the IV in her hand hurts.  Not too bad if you ask me!  They plan to move her to her room tonight so that certainly sounds like recovery is progressing nicely.

I will post again tomorrow after I visit in the afternoon but then I am out of town so there will be a delay until honey schnookum buns is available to post, or the Q manages to log in (oh dear lord the humanity!!!!!)

Still going good!

JT: I got another call from a nurse.  She said that everything is still going well with Q but there is still a ways to go.  When I asked she estimated 7 at the earliest for a finish so I don't know if I will have any real information before that.  The wait continues....

Mid-way update

JT:  I just got a voicemail from one of the OR nurses (damn phone doesn't ring half the time) and she said the surgery is progressing well and she is doing fine (Q is at least, not the nurse).  That's all I know right now but it sure sounds good!

And so it begins....

From JT:  I dropped the Mighty Q off "bright" and early this morning.  She made cookies for me and the surgeon so it's not all bad.  I think she's feeling a combination of nervousness (since there are no sure things with the surgery) and relief (she will be able to breath again) about the day.  She was fairly upbeat during the prep time and we just joked and talked about a variety stuff a bit.  She had a big team of people around her that are going to be helping with the surgery and she seems to be in good hands.  They are supposed to update me throughout the day so if I have anything I'll post it here.  The doctor himself will call me when it's all said and done, but that will probably be dinnerish time.  Wish her all the best!

August 21

This is it......my last night at home for a while......

I need to be at the hospital at 6:15 tomorrow morning. Justin is less than thrilled. Poor guy is a 45 minute drive outside of the city which means he needs to leave his house at what I would call stupid o' clock in the morning in order to pick me up at 5:45. I'm going to owe him huge. I DID bake him some chocolate chip cookies for the drive but I'm pretty sure that's not going to be enough.

I also baked cookies for my surgeon. I was told not to bring ANYTHING with me except a photo id. So, I had to repack my hospital bags into one bag that Justin will bring to me on Friday when he visits. I'll have to see what they say when I show up with a tub of cookies in hand.

Surgery is supposedly scheduled for 8:30. We'll see how that goes. The PEG insertion was scheduled for 1:00 and didn't happen until 4:30. Of course that was a 30 minute procedure whereas this is an 8-10 hour procedure. I hope Dr. M makes it home from Kenny Chesney safe and sound!

I skated out of work at 1:00 today. I simply couldn't sit still any longer. I came home, baked two batches of cookies, mowed the front and back yard, cleaned up the house, did some dishes, did some laundry. I basically haven't stopped moving the entire day. I'm trying to tire myself out because I do NOT want to be up all night worrying about what tomorrow is going to bring.

That's all I've got today. I'm going to head upstairs, play a little W.E.L.D.E.R. on my iPad and turn the TV on to keep me company for a while.

Wish me luck! Hopefully I'll talk to you all on the other side of this thing!

August 20 - Part II

Almost there, almost there, almost there............

I've been sitting around for the past 45 minutes waiting for the VN. She called me at 4:30 and said she'd be here at 7:00. I told her that was fine and set my alarm for 6:45. (I had a really bad night of sleep again last night so I've been doing nothing but napping since I got home from the baseball game.) It's now 7:54 and she's still not here. Whatever. As soon as I'm done with my current feeding, I'm heading back to bed.

Today was half a day of work, half a day at a baseball game. Ahhhhh.

----------Okay, I just paused in writing this because the VN FINALLY showed up. I actually liked her personality-wise but on top of being an hour late, she's a smoker too which was a huge turn off.  She has no idea what is causing the speckling on my torso. She's never heard of anyone being allergic to Jevity. She called the on-call doctor. He doesn't know what could be causing it either. I haven't switched laundry detergents. I'm not using massive quantities of surgical tape. Although, now that I'm thinking about it, last Friday when I showered, I noticed that there was some kind of blue dye very lightly painted across my torso. I imagine it was some kind of anti bacterial stuff they put on me for the surgery. I wonder if I was allergic to that? Meanwhile, since it doesn't itch or hurt, the VN said to just wait and see if it gets better or worse. I told her about the spasming thing and she agrees that it might be my stomach contracting in hunger. She said I'm probably noticing the tube jumping because of the bumpers they put in under the tube base. She said she had never seen the bumpers before and it must be something new that they're doing. She told me that I should try bumping my feedings so that I'm drinking a can and a half at a time, 4x a day instead of 1 can, 6x a day. She said I might be able to train my stomach to not spasm as often. I thought that sounded like a good idea so I will implement tomorrow. I also showed her that there's still some bleeding and leakage around the PEG site. She pointed out that there looks like there's a tear in the incision on one side. She said to keep washing it every day and maybe change out my dressing twice a day instead of once a day to make sure it's staying dry and it will heal faster.

And now back to our regularly scheduled program. The baseball game was fun. It was gorgeous outside and it's always good to mingle with the coworkers in a social setting. Boss guy bought me a beer. Both H and Jer also wanted to buy me a beer but let me tell you, that one beer was more than enough. I have no tolerance any more at my vastly reduced weight! Cheap date! Cheap date!

I got to hear the scoop on Kunkel's adventure with Wheel of Fortune. She goes back to Syracuse on Thursday next week for the second round of auditions. I am SO excited for her. I told her to win me a jacuzzi or something. It was at that point that Maynard said I must have watched Wheel of Fortune many years ago because they no longer have it where you win money that you then spend in the day's showcase. You pretty much only win money nowadays although they throw in trips and cars once in a while too. I'll have to see what day/time this show is on and check out the new format before Kunkel makes it on there!

I finally got to meet Brian's wife, Colleen, and I got to hold baby Thomas! Woo hoo! Cutest kid ever! Loved him! Meanwhile, Thomas was having a blast with Maynard. There's nothing sweeter than watching a grown man get all goofy in order to make a toddler laugh. That Maynard is a total cutie as well!

I sat next to boss guy's wife and gave her the latest cancer scoop. Boss guy had just mentioned that morning that she reads my blog and gives him the highlights when they're turning in for the night. I got a little embarrassed. I don't know why. I guess when I started this blog I pictured that it was me having a conversation with a handful of my friends (JBB, Sammy, T, Sandi, etc.) and I still continue to think of it that way. Meanwhile, according to the stats page on here there's at least 30 people reading it on a regular basis and sometimes that number jumps to over 50. It feels weird knowing that there's a slew of people out there reading my goofball ramblings and I start wondering if I should be editing myself a little more closely so that I don't come across sounding like a total spaz. The answer to that, of course, is nah. My boss guys favorite saying? "It is what it is". Or in this case, I am who I am. :-)

I spent over an hour last night writing out 25+ thank you notes. When I first sat down to do it, I was procrastinating a little because it's one of those pesky chores that you just kind of have to get done. As soon as I started writing though, I ended up enjoying myself thoroughly. I personalized each and every one of them. There are so many people in my life who have done so much for me over the past year and to be able to sit down and simply tell a bunch of them how loved and appreciated they are, well, it felt really, really good.

And I'd like to do a few callouts on here too. My coworker, Chris S., came through already by sending me some ASL books all the way from North Carolina on top of the local contact he gave me as well as some websites and classes to research. What an absolute sweetheart! I've decided that even if I end up keeping my voicebox and am able to talk again eventually, I still want to learn ASL. I think it would be a really handy thing to know. Thomas, who by the way is only 18 months old, actually knows some ASL. I guess they teach him some signs in his day care which according to his mom comes in super handy when your kid isn't talking yet. So he says please, thank you, more, all done, and a few other things in sign. It was amazing to see!

Toby sent me a link the other day about some new potential breakthroughs in the 'cure for cancer' race that continues on. He's always sending me links to upbeat articles and basically just keeping hope going strong. I totally love him for that.

Andy continues to check in regularly from Idaho via text. He's always got some tips or a simple 'hang in there' message for me that feels like a verbal hug every time I hear from him. Or else he's cracking jokes that make me sputter and laugh. I was told today that when he and his wife play backgammon and someone starts rolling way too many doubles when taking their men off the board, they say "hey, stop Quinning me!". Yep, they verbed my name. I decided that was an excellent bucket item list and that every one should have that goal, to have their name used as a verb.

And to Judy, thank you so much for the gladiolas. They look beautiful on my kitchen table and make me smile every morning when I see them.

And JBB, keep checking in with your twisted sense of humor, girlie. Every time I see your e-mail address pop up in my in-box I get excited because I know I'm about to have a good laugh. And I totally love my F&#ck Cancer sweatshirt. It's washed and ready for me to wear into surgery on Thursday! I be styling!

And T, I love my sunflower stuff. And Kit, thanks for continuing to quietly check in from time to time and letting me know you're there if I need you. And both El and ElRay, thanks for your cheerleading, it really does help. And Sam, I'm glad you're just as big a dork as I am in this situation. Solidarity sista. And Sush, it was great to hear from you and thanks for keeping me in your thoughts. And Sandi, thanks for letting me dress you up for your golf tournaments, it's a great distraction. And Dr. Karen, the Punch blog is awesome, and I can't wait to read yours. And Karen L, so sweet of you to offer to be my person and thanks for the random thinking of you texts, they always brighten my day.

I'm sure there's a bunch of other peeps that I should call out but I'm starting to fall asleep at the keyboard. Think it's time to hit the hay. ~34 hours and counting down..............

August 20

My apologies. Sometimes I forget what I've written about in my blog and what I haven't mentioned. So, before anyone else has a heart attack about the breathing thing, let me do a quick clarification.

The doctors already know about it. They said if I stop breathing for 10 full seconds before being able to take my next breath, that's when I need to take myself to the hospital. Otherwise, there's really nothing they can do about the tumor blocking my airway until Thursday, at which point they plan to remove it. :-P

And I have an appointment with the VN tonight so I was going to ask her about the rash and the spasm thing first before escalating it to the doctor level.

August 19

Well, I was just totally called out. I guess when I said I would have all this free time to blog while I "eat", I may have accidentally ramped up expectations on how often I blog. :-P

Let's see what kind of rambling falls out of my brain today.........

I worked a full day today. I was a little worried about it because after working only half a day on Friday I ended up wiped out, running a fever, and not feeling well at all. Luckily, today went okay. I'm definitely pooped but not to the point of being sick. And I totally kicked ass at work today! I finally got my customer distribution list cleaned up and sent out a mass e-mail letting my customers know I would be gone for the next 4-6 months and who they should contact for different aspects of my job. Thirty seconds after I hit send, my phone was ringing. There's an older gentleman who works at one of our local customer sites who has taken quite a shine to me for some reason. Whenever he calls to place an order, and he always calls first, then e-mails the purchase order, because he loves talking to me, it means I'm on the phone for at least 20 minutes shooting the breeze with him. So anyway, he knew about the cancer sitch last summer so as soon as he saw my e-mail, he knew. Poor guy was almost in tears on the phone. I wanted to reach out and give him a hug. I've never even met this guy! Anyway, I received a handful of inquiries back from some of my customers that I have a warmer relationship with than just business. I feel good that I finally got the word out. I meant to do it 2 weeks ago but just haven't managed it. Another bright spot to being at work today. I've already managed to 'eat' 6 cans of Jevity! I only managed to eat 5 on both Saturday and Sunday but I'm supposed to be eating 6. Since it's still early in the evening right now, I think I might go for can number 7 before I go to bed. That will help make up for one of the weekend days, right?

So, I went into the hospital weighing 109 pounds. I came home from the hospital hydrated beyond belief, because they certainly didn't feed me in there, and I weighed 114 pounds. This morning I've dropped back to 111 pounds. I was slightly bummed at first but hey, it was just water weight anyway and I'm still 2 pounds up from where I started so I'm ahead of the game as far as I'm concerned.

Baby doll said he tried commenting on my Saturday post but I guess it didn't "take". Here's what he said:
"I tried to post two points. 1) I also remember Doc M. saying radiation is only effective on rapidly multiplying cancer cells, but not the slow burning type. 2) I believe that thingy you were searching on your google journey of despair was an ultrasonic Doppler. It can indicate if your flap is alive without any invasive wires."

THIS is why I take people to my appointments with me. It's a Doppler, not a sonogram. That was seriously bugging me. I'm psyched that baby doll came through with that one.

I ended up having a bad night last night. My breathing is going downhill even more noticeably than before. I might be spending the next few nights on the couch because my throat seems to open a little if I'm siting up. I actually went looking for my inhaler in the middle of the night because I woke up thinking I was having an asthma attack for the first time in 15 years. (Please note that I haven't kept an inhaler in the house for at least 10 years now.) Then I realized it seemed more like my throat was closing up, not my lungs. Can I tell you how scary a feeling that is?? Thursday simply can not come fast enough as far as I'm concerned. I realize I will be in a whole different world of hurt after the surgery but at least it's a controlled and supervised world. I feel very vulnerable being home and alone with all these different health things cropping up. I'm not a doctor so I never know how much of a panic I should get into about things. Not being able to breathe is a no-brainer though. Hopefully it won't be as bad tonight. I currently have some kind of speckling all over the front of my torso. It doesn't itch or hurt but there are definitely a billion little red dots covering my abdomen and going partway up my rib cage. Nothing on my thighs though. Think I should be worried?

My stomach keeps doing this weird spasming thing. It tightens, tightens, tightens to the point of being extremely uncomfortable and then it throbs really hard (you can actually see the feeding tube bounce!) and then it relaxes. It feels like my stomach is tying to eject the feeding tube. It's a seriously gross feeling, like my stomach is alive and has its own identity. Meanwhile, when it relaxes, it only lasts for ~10 seconds and then starts tightening again. It woke me up on Saturday morning doing this. On a whim, I got up, hurried downstairs, and plugged in a feeding. The tightening immediately stopped. I am now plugging in a feeding every time it starts to spasm. It doesn't always stop it right away but it at least stops within a minute or two. So I'm wondering if that's my stomach's new answer to growling when it's hungry. And no, I never feel hungry and I do not feel full after I 'feed'. I don't really feel much of anything in the sustenance department. Weird, I know.

It turns out JT will be leaving Saturday morning instead of Monday morning for his latest out of town trip. Why am I telling you this? Because he was going to keep my blog updated until Scott could take it over on Monday. Meanwhile, since I've decided to sneak all of my technology into the hospital anyway, maybe I'll be up for blogging myself by the weekend. No promises though so you might have to go Saturday and Sunday without updates.

I'm feeling pretty good about the homestead. Everything is cleaned, stocked, and ready for company. The only items left on my list are to find a snow plowing service, mow the lawn (front AND back), and possibly get my gutters cleaned. I will then have accomplished all that is needed for the next few months of my life as far as I'm concerned.

I can't remember if I mentioned it in a previous blog or not but I've been getting gifts from my coworkers all over the place. Management presented me with a card full of cash (they had wanted to buy Scott and I a day at the spa but then found out I hate the spa), then my peers got together and presented me with a card full of cash today, plus Lisa gave me a gift bag that was supposed to be from the company as a whole that had lotions, and a TV blanket, and a scented candle, and whatnot in it. Not only am I getting hugely spoiled but I can now make my mortgage payment two months in a row, no worries. How crazy is that?? My coworkers are the best!

I think I need to start keeping a log, and along with a log, maybe a score sheet. And peeps need to weigh in on who's the Gomer, me or baby doll. For example, we were laying in bed one night and I was overcome by a huge shiver. He said "What was that?" and I replied "I dunno, someone must have just walked over my grave.". He was dumbfounded. He had never heard that saying before and thought I was bullshitting him. I made sure to Google it the next day and sent him the link.

Then I was telling him that when Kunkel and I were golfing a week or so ago, we saw a woodchuck, and she sang the first half of the ditty. I then sang back the second half of the ditty to her. She seemed surprised. I'm not sure if she didn't know there was a second part or if she knew there was one but just didn't know what it was. Meanwhile, it turns out that honey bunny didn't know there was a second part either. Really?? Is it just me?

Q: How much wood would a woodchuck chuck, if a woodchuck could chuck wood?
A: A woodchuck would chuck all the wood if a woodchuck could chuck wood.

And on a side note, if you really want a laugh and you have Siri on one of your gadgets, ask her the question part of that ditty. Her response had me rolling!

And then the last one. Or at least the last one that I can remember because these things have been cropping up for 7 months now, I'm just not remembering them all. We were sitting in the waiting room on Friday for my doctor's appointment. I was telling him that I was a bit bummed about my hospital stay because for the past few weeks I had been watching a Mommy Longlegs carrying around her egg sac in the corner of my shower in the basement. The babies finally hatched and there were 100 little dust specks all over the web. It took a week or two but they finally got big enough that you could tell they were spiders. Then I went into the hospital last Wednesday and when I finally took a shower again on Friday morning, all the babies were gone! I mean gone, gone. I figured at least a couple would hang around. Maybe spin a web in each corner of the bathroom or something but nope, they disappeared without a trace. Baby doll just sat there in his chair, in the middle of the waiting room, with his mouth open, looking at me. He wasn't baffled about 100 baby spiders disappearing so completely. He was baffled as to why I spent weeks watching this whole adventure unfold instead of just squashing the poor thing. First of all, Longlegs are supposed to be good luck, who doesn't know that? Secondly, I swear I read at some point in time that their mouths are so small they cannot actually manage to bite a human, even if they wanted to, so they're absolutely harmless. Third, it was like having the Animal Planet channel live in my home. How can that not be cool??

Okay, I'm about rambled out. It turns out there might be a teeny tiny difference between spending a day lounging on the weekend and putting in a full 8 hour day at work. At least that's what my body seems to be telling me. Luckily tomorrow is only a half day at work and then the company is taking us out to a baseball game. I won't be able to partake in the pulled pork, BBQ chicken, and all the fixin's that they'll be serving but let me tell you, I sure as hell will be taking advantage of the beer stand! Plus I get to see Kunkel. That little brat goes on vacation but then sends a text saying that she's been called back for round 2 auditions to be on Wheel of Fortune. How freaking awesome is that?? I can't wait to hear every last detail about it!! I want to go on a game show! Maybe I should add that to my bucket list................

August 17

An added bonus to this feeding thing is that I have to sit upright someplace for 45 minutes and then I'm supposed to stay sitting up for a half hour afterwards. Perfect blogging time!

So the next time I start feeling bad about medical people or regretting moving from Dr. C to Dr. M, I need to call and make an appointment to see Dr. M. He's the bomb! My pre-surgery meeting with him yesterday afternoon was the total opposite of depressing. Which is good because I'm getting antsy with surgery being less than a week away and my most favorite person in the world is leaving for Myrtle Beach with his daughter as I type this. I had expected this weekend to mentally suck but Dr. M gave me such a boost that I just may sail through this weekend, no problem.

I went over the same questions with him that I did with Dr. V just to verify that I had my info straight. I also had some additional questions saved up, plus Dr. M added his own stuff. So here's what I heard yesterday:

He's going to try not to remove a tooth but he says that the saw they use sometimes will not fit between a patient's teeth and he feels it's better to ruin one tooth instead of accidentally ruining two teeth trying to get the saw in. He said if he does have to remove one, it will be a bottom tooth off to the side, not directly in front. He said he doesn't want me to look like a hockey player. :-)

He agreed that 6 weeks might seem like a long time between PET scan and surgery but he's confident that the cancer did not spread in this amount of time. I told him about Dr. C's assessment of it being a slow burn instead of a brush fire and he totally agreed.

I told him that Dr. V thinks the left side of my neck may need to be re-opened in order to find viable veins to hook the 'flap' to. Dr. M disagreed. He thinks there will be plenty of veins still usable on the right hand side.

He agreed that 'flap' health is the biggest milestone for getting me out of the hospital. He said if a flap is going to fail, it normally does it within the first 48 hours. It doesn't usually wait for 7 days then suddenly fail. He said that I probably had wires sticking out of my neck after my last surgery that they kept hooking up to a pulse monitoring machine. I said yes. He said he doesn't like that. I won't have any wires sticking out of me, they will simply press a tool against my neck to monitor pulse and temperature to verify it's still alive.

He stressed the fact that he's going to work very hard to not take my voicebox. He said that Dr. V is of the school of thought where as soon as you remove half the tongue base, he takes the voicebox. Dr. M says that he himself won't even consider it until at least two thirds of the tongue base need to be removed and even then, he might not do it. He said that I'm young enough that I can probably handle aspirating a small amount and if it ends up becoming a problem, he can always go back in and yank the voicebox. He would just really rather keep it intact. He also said that based on the MRI and scans, he really doesn't think there will be a need to remove it anyway. He said that he's only ever been surprised twice when opening up a patient and had to affect more functionality than he thought.

This is why I like talking to the guy. He's so damn optimistic! And he backs it up with little factoids like the two times he was surprised. He even told babydoll and I what those two time were. Granted, he might be full of shit, but I'm already prepared for the worst so it's nice to have someone be so upbeat about the whole thing.

He briefly explained that I won't be put in the ICU but I'll be put in what they call a step down bed. This is the thing that Nurse Jo Ann was talking about before. I guess it's a bed that's on a floor rather than in the ICU but where I'll get the extra attention I need for a day or two before being moved to a regular room. He said that Highland hospital doesn't have the nursing staff to support this kind of setup but Strong does.

I asked him how soon after surgery does the radiation and chemo start and are they simultaneous or one after another. He said he would start those treatments within 1-2 months after surgery and they would occur at the same time. I think he said that chemo would be once a week for 3-4 weeks and radiation would be the same as last time, 5 days a week for 5-6 weeks.

He talked about how the margin that was taken on my tumor last time probably missed one measly, little cancer cell which then decided to burrow down further into my tongue and hibernated for a while and the radiation somehow totally missed it. He said it could have even been slowly growing while I was getting radiation done but because it's growth was so slow, radiation wouldn't have targeted it because radiation is meant for faster growing cells. Or something to that effect. I'll have to ask baby doll if that's what he heard too.

Meanwhile, I was Googling a few minutes ago to see if I could find the word for the piece of equipment they use to make sure the flap is still alive and I stumbled across a support site where a 24 year old girl was asking for advice in regards to how self conscious she feels about her speech after her glossectomy. Everyone that replied had a little history blurb about their cancer and let me tell you, of the ~15 people that replied to her, every single one of them had their tongue cancer come back at least twice, if not three times!! This is why I do not Google about what is going on with me. I'm sure I can probably find some good info out there but along with the good info, I'm going to get info that isn't going to do me a lick of good. I started this post in good spirits because of Dr. M and his kick ass attitude and I am now feeling really down because it would seem that even after the holy hell I get put through next week, the chances of me having to go through it again are sounding pretty high. What a bunch of crap.

<sigh> I truly hate Google sometimes.

Anyway, even though I am now deflated, I still have more Dr. M stuff so let me get on with it.

Baby doll and I are still booked for the cruise on October 5th. I asked Dr. M what the chances were that we would be able to make that cruise. He said that everything would have to go absolutely perfectly in order for me to be traveling abroad that soon after surgery. He said if we can push it out, that would be best. We also need to keep in mind the radiation/chemo thing too. If I start that 4 weeks after the surgery, I could be done with it by the end of October so a November cruise might be possible. Not sure what kind of shape I'll be in though. Plus, baby doll has some strict limits on when he can take time off once the holiday season is upon us. Guess we'll have to put some thought into it.

I teased Dr. M a little, asking him how he was feeling and telling him I didn't want him out drinking next Wednesday night and that he'd better get plenty of sleep. He said he has tickets to see Kenny Chesney and that he's the designated driver so it should be okay. ;-)

He talked about how he was going to have the big trach in me the first few days but he would then swap it out for a smaller trach so that I could talk and how he would have me up and walking just a couple days after surgery. This led to me verifying when I would be able to go back to work. He's sticking with his 6 month timeline. He said it might be conservative but that's the expectation he wants to set.

I told him how I didn't need pain meds after the last surgery which seemed weird. He said that he also has found that patients with head and neck surgeries often feel less pain which he thinks is crazy. He said if it was him in my shoes he's be crying like a baby, begging for pain meds. Ha! He said the lack of pain might also be due to the fact that they cut through a ton of nerves when they operate in those areas so there are no receptors left to feel any pain. That made sense to me since my entire neck is still numb from the last surgery.

I told him that I had given Jo Ann the number of the person to call when I get out of surgery. He asked if I could give it directly to him as well, so I did. JT should be fully briefed as soon as everything is done.

I asked him if my paralyzed vocal chord will ever start working again (Thanks Kunkel, great question!) and he said probably not. I told him that Dr. V had said something about moving it over. He said that that's a simple in-house procedure that we can easily do after the surgery is done and we see where things stand.

He once again reassured me that the scar from splitting my lip would hardly be noticeable. He also said that I should not be able to see the metal plate they use to reattach my jaw under my skin although he seemed a little concerned about that based on how skinny I am. He also mentioned that one difference I might see this time that I didn't see last time is that I'm going to wake up with some major chipmunk cheeks. He said the swelling will go down after a few days but he wanted to warn me since that probably didn't happen last time.

In the end I told him that he was my all time favorite doctor to talk to. He's just always so up about everything. He said that what I was going through was hard enough and the least he can do is be half glass full guy for me. I'm going to bake him cookies and take them to surgery with me. I have no idea if they'll actually get to him but I'm going to make the attempt anyway.

Baby doll said one of the things he liked the most about Dr. M is that whenever I started talking, Dr. M would immediately stop talking, make eye contact and give me his full attention, and answer whatever question I had very clearly. Nurse Jo Ann was right. He IS an excellent communicator.

So, that about wraps up my appointment yesterday. Other sundry stuff that's been happening.....

I heard back from the corporate guy. My life insurance is not portable should I lose my job at QED.

I called Hartford over a week ago to open my short term disability claim. Their system was down but I spent 45 minutes on the phone giving them info so they could start a 'paper' claim. I was told it would be entered back in the system within 3-4 days. I called back twice to check and it still wasn't in the system yesterday so I had to sit on the phone and go through all of the information all over again. What a HUGE PITA!

Boss guy totally thinks I should go for it as far as bringing my iPad to the hospital. He said that Strong hospital is known around the world as a class A facility and he said if for some reason it DOES get stolen, he'll get me a new one and figure out how to expense it to the company. ;-) Boss guy rocks!

I wore my adorable pink booties in the hospital on Wednesday night that baby doll had bought for me at Barnes and Noble. I had almost changed my mind about letting him buy them for me because they were so ridiculously priced but I truly love them. As I was shuffling down the hall on one of my many trips to the bathroom (damn saline drip!) one of the male hospital workers commented on how cool my slippers were. :-)

Two nights ago Scott was swapping around our cars so that he could park his Corvette in my garage and leave my Honda in the driveway. As he was getting out of the Honda, some guy who was looking at the house that's for sale across the street called over to him and asked how much he paid for his Honda and started talking about what a kick ass car they are. Scott politely told him that he didn't know because it was his girlfriend's car but the word bubble above his head was saying "Dude! Seriously? Did you not just see the sweet ass Corvette that I pulled into the garage?! You're asking me about the HONDA?!?". LMAO!

And on that note, I'm going to go take some pain meds and have me a mid-morning nap. <3