Monday, September 30, 2013

September 30

Okay, I'm totally loving the hair. It doesn't get stuck under my neck bandage, doesn't get sucked into my stoma, and it's so easy to wash that yesterday I actually washed it twice! Not that I had planned on that. After my shower yesterday morning I put a little pomade in my hair to try and give it the beachy look like Jen did. Yeah, no. I think I used too much because I looked like a total grease ball. I finally couldn't stand it and at 5:30 yesterday evening I washed it again. This time I didn't use any hair products. Just blew it most of the way dry and I was happy. The girls at work today told me that it looks just like when Jen did it so it would seem to be a maintenance free style. Love it!

I had reported in about tossing cookies once before although I think it was just because I bent over right after eating that it happened. Well, Saturday I tossed cookies for real. I wasn't feeling good while I was getting my haircut and I thought I was going to lose it on the drive home but I managed to get home without an incident. I decided that maybe I was hungry. That was a bad move. No sooner did the feed end and I was in the bathroom with my head in the toilet. I'm happy to report that it's still very easy to puke now. There's no gagging or dry heaving involved, it's very painless. ;-) I finally figured out what the problem may have been. A lot of the meds that I take should be taken with food. When I did my morning feed, I kept dozing off so I decided that maybe I wasn't ready to get up yet. I stopped mid-feed and went back to bed for an hour and a half. When I got up again I didn't finish the feed but I took all my morning meds. Note to self, don't do that again.

Had a peaceful day with my hot, hot man on Saturday. We ended up going to the zoo. It was a good day for it. We got to ride in the vette with the top down, walk around a beautiful, little zoo and view all the cool animals, it was a good day.

Yesterday was the big social outing for the Breaking Bad finale. I ended up watching the first 3 episodes on Saturday night so that I would have some clue as to what was going on. Sunday was spent cooking. I made 7 layer bars, tortilla rollups, bacon wrapped lil smokies, sausage and cheese stuffed jalepenos, and Texas caviar. Yeah, I went a little overboard. Needless to say a lot of leftovers were taken to QED this morning. But the peeps last night seemed to enjoy all the goodies. And I had fun hanging out. Baby doll has most excellent work peeps, just like me. :-)

On the health front, that stupid spot on my road rash is refusing to heal!! Every morning I gently pull the bandage off and every morning it starts bleeding again. Ugh.

Today was the last of my antibiotics so I will be paying extra good attention to what is going on with my neck from here on out. And baby doll now knows that if a funky odor starts up, it means infection has set in and he has promised to notify me about it. I told him he needs to promise to notify me about any type of hygiene issue. Bad breath, body odor, whatever. Not being able to smell really sucks. I lit all 5 of my tart burners today. I put in something called cranberry peppermint. Hopefully my house smells good. <sigh> And last night when Scott and I got home from the BB thing I wanted a CBD. I pulled out my milk and it said that it expires on 9/29. I had to have him smell it for me to let me know if it was still good or not. Sheesh.

My neck continues to look a teeny bit better every day. I still can't swallow my own spit. My ankles are still unbelievably swollen. I feel like my stoma is still shrinking (I'm asking the doc about this on Thursday.) I have VERY limited movement in my neck when it comes to looking up. Down, and side to side have greatly improved but looking up is getting worse. I'm hoping this week Dr. M will finally give me the okay to start working on the neck exercises that the physical therapist gave me. I also got a note saying that Michelle, the speech therapist, will also be seeing me on Thursday at 1:00 along with Dr. M, so maybe things are going to start moving in the eating/speaking department as well. Fingers crossed.

My second month of lary supplies was delivered today. They sent two nebulizer tubing setup thingies that I've never seen before and that I have no idea what I'm supposed to do with. The kid who delivered didn't seem to know either.  Ah well.

I think that's about it for excitement over here. Sammy sent me a birthday present today. It's a paraffin bath for my nasty, cracked fingers I have going on. I'm super psyched to try it out so I'm off to play..........

Saturday, September 28, 2013

September 28

So, I found a picture of Julia Styles that I really liked and went with it.

My hairdresser, Jen, is totally awesome. I e-mailed her ahead of time letting her know what's going on with me and what's has been and will be going on with my hair. So she came prepared with pics on her iPad and had some really good input such as; she said that she thinks I'd look adorable in a pixie cut but I have enough shocks going on n my life right now and to go from really long hair to a pixie was probably asking too much. This cut is what we came up with. I like it so far. We'll see what the upkeep is when I wash it and 'do' it myself.

I ended up getting a little over heated while she was cutting my hair. Thought I might pass out! I ended up asking her to take a 5 minute break at which point I stripped down to just my tank top and had to go stand on the porch for a few minutes to cool off. Got a little nauseous too. Not fun.

Nothing really new on the health front to report. I used my hand repair kit last night and my hands feel marvelous this morning. I'll be using that stuff every night while I sleep.

I started my packlist for Niagara Falls. I have a column for Luggage, a column for HBA, and a column for Lary stuff. The lary stuff is by far the longest column. Sheesh!

My friend El posted an article on Facebook recently that I absolutely loved. I want to print it out and read it like once a week just to keep me ticking in the right direction.

That's really all I have today. Things will get a little more exciting once I go see the doctors on Wed. and Thurs.

Friday, September 27, 2013

September 27

I decided yesterday that being tethered to my house was not helping my crumbling emotional state so I've officially declared myself okay to drive. And with that, I was buzzing around like a crazy woman for over 4 hours yesterday. Here's what I accomplished:

I went to the Asian market over on West Henrietta and picked up some more sushi rice. I like it better than the white rice that you can buy at Wegman's, I don't know why. It's probably the same crap but hey, if it makes my brain happy to buy rice from Korea then so be it.

Then, since I was in the area, I figured I would stop off at Strong to pick up those 2 prescriptions that Jo Ann said she called in 2 days ago. Yeah, right. According to the pharmacy, there was nothing in the system for me. So, I marched down the hall to see Jo Ann and get the scoop. I guess Strong needs a week to process scripts!! How crazy is that! She called the pharmacy and asked them to expedite since I was there. I walked back to the pharmacy and they were still clueless so I said screw it, I'll just grab them next Wednesday when I'm there for the chemo/radiation appointments. The only med that I'm concerned about is the thyroid one and I have plenty of that. All the rest of the meds are basically just vitamins b/c they're trying to beef up my health. So, I paid $3 for parking for no apparent reason. Stupid hospital.

Next on the list was dropping off a donation of clothing at the Goodwill on Clinton. And then since I was so virtuously donating a bunch of stuff, I stopped at the VOA and dropped $90 on some new thrift store clothes. Because hey, I was running out of things to wear, you know. ;-P

Then I stopped off at my hair salon. I made an appointment to get a trim with Jen at 10:00 on Saturday morning. The guy at the desk was awesome! He immediately verified my e-mail address instead of my phone number. Some people just get it. Which reminds me, I was talking to G on Wednesday in the living room and he had his speaking volume turned up pretty loud. I didn't even have to say anything to him, he suddenly stopped mid-sentence and said "why am I yelling at you, it's not like you're deaf!". LMAO!

Then I started trundling down Culver headed towards home when I saw the early bird special sign in front of Culver Auto for snow plowing service. YES! I've been waiting for that darned sign! So, I popped in there. "Talked" to the dude. He asked me if my trach was permanent. I said yes. It turns out he had a trach for 10 years due to some severe sleep apnea. Which was funny because when Kit and I were in the waiting room on Friday, the kid sitting across from me struck up a conversation with me about my trach. He wanted to know what it was like. He said that he was in the middle of making a decision about getting one due to his severe sleep apnea. I had no idea that that was a fix for that type of thing and in less than a week I meet two people who had it for that reason! Anyway, snow plow dude is going to swing by my house and then e-mail me a quote. He said if I pay him up front before the end of October then the early bird special will save me ~$30 off the normal price. I asked him what the normal price is and I think he said it was around $220. So, less than $200 for unlimited plowing sounds good to me!! He said that he starts his run at 3 AM and it's usually a 3 hour run so being plowed out by 7 AM is no problem. He said that he can't make that same guarantee for day time plowing due to traffic and whatnot. Also, he said no more than 2 trips are made during a 24 hour period. All of it made sense to me and I liked him so as soon as I get the quote, I'm going to buzz down and sign up. Phew! Glad I finally got that taken care of.

Then I hit Wegman's for the third time in a week. I wanted to stock up on some canned stuff and I needed some ingredients for the mexican rollups I"m making for the big Sunday night social outing test. I love Wegman's but man, my wallet really hates it.

So that was my big day out and about. I'm going to be out and about again today but hopefully not for as long. I made babydoll some Aztec salsa last night (it came out super yummy) but the recipe made a TON of it so I want to drop off the leftovers at QED for my peeps. And while I'm there I want to make copies of the insurance paperwork that I'm sending in so that babydoll and I can get a refund on our cruise and flights.

Part of my road rash was bleeding again this morning so I'm back to a small bandage. There's just one little stubborn spot that doesn't seem to want to scab over.

Since I'm not nothing but skin and bones, I stopped wearing a bra since the surgeries. I just wear tank tops under all of my clothes. It keeps things covered and adds some warmth to whatever I'm wearing.

There's been some scabbing around my stoma. Some of it I've been able to remove, some of it I haven't. I can't tell what's normal skin and what's part of the skin graft so I'm afraid to start picking at it. Meanwhile, from what I read, I think it's important to not let scabbing happen around the stoma. That's what starts closing it up which would be a rather large problem. I'm going to ask Dr. M about it next Thursday when I see him. I hate having to constantly verify if I'm doing things right or wrong but since there doesn't seem to be any training on being a laryngectomy, I'm constantly having to wing things, and research Youtube videos, and whatnot.

There's still a small infected spot on my neck. Last time I checked it though it's slightly smaller than a quarter so it's definitely shrinking. I still have 3 more days on antibiotics (I've been on them for a month straight now!) so hopefully it will be cleared up by then. I think the hole from my throat finally closed up too because I haven't been leaking very much at all for the past handful of days. It's so nice to not have to tape a bandage to my chest to catch disgusting goop drips before they ruin my shirts.

I've also noticed that I'm coughing a lot less. Before I would have a coughing fit every half hour. Now I cough every couple of hours. I'm not sure if that's a good thing or not though. I mentioned that I'm using the mister quite a lot less than what I was told to use it so now I'm worried that I'm drying out my lungs and they're shriveling up into useless little baggies. Either that or I really was way too swampy down there and now that I let things dry up a little I'm at a normal stage for lary's. Who the hell knows?!?

Okay, those are the updates for now. I have to figure out what I'm going to do with my hair at my Saturday appointment. Just trim it and continue to wear it up? Get it cut short so that I can start wearing hats and not have to worry about sucking it into my stoma? Decisions, decisions....

Wednesday, September 25, 2013

September 25

The lunch today was a success! I had 15 of my coworkers at Chez Quinny chowing down on jambalaya and cornbread. What fun! And it was so good to see everyone. Man, you work at a place for 15 years, and you kind of get attached to your coworkers over the years......

Everyone was telling me that if there's anything they can do, just let them know. But my buddy G specifically said "Quinny, you have a hell of a lot of muscle hanging out in your house right now, is there anything heavy you need lifted while we're here?". I love that guy. His specificity made me realize that I still hadn't uninstalled my air conditioners in the bedrooms. In a blink of an eye, he had them yanked and put on the shelves in the basement for winter storage. G rocks!

Brian brought me some more puzzles for my entertainment. There's a Star WARS puzzle (ha!) and there are two Simpsons puzzles. The Simpson puzzles are one big picture but if you look closely, the big picture is made up of hundreds of smaller pictures. OMG. I think baby doll and I might lose our minds trying to put one of these together. I'm both excited and scared to take one on.

Today was the first full day that I did not have to put a bandage on the 'road rash'. Baby doll noticed last night that I didn't have it bandaged and he said it's looking MUCH better than the last time he saw it. I was also talking to him about getting the low profile PEG put in. As I was talking I was looking down at my current feeding tube and he commented that I'm also bending my neck down a lot farther than I used to. And then, for the trifecta of improvements, last night for the first time since all this surgery nonsense, I laid on my side in bed, instead of on my back, so that I could snuggle with baby doll! Woo hoo! That's a huge milestone!

I forgot to mention that Stephanie from VNS was over to see me yesterday. The only complaint I had was that my ankles are still really swollen. They went down a little bit when they had loosened the road rash bandage in the hospital, but they haven't returned to normal. Stephanie said the only thing she could think of that might be causing it is that I'm not getting enough salt. She told me to add 1/4 teaspoon of salt to my power cocktail every morning to see if that helps. This morning was the first morning I did it. No clue how long it takes to kick in but no noticeable difference yet. Stephanie also said that she's going to come see me one last time next Friday after my check in with Dr. Miller and my PEG sizing appointment. Then she said she's probably going to close my case because I'm doing just fine. I was so relieved to hear that! Some VNS called on Saturday afternoon wanting to come over and I asked baby doll to let her know I didn't need a visit. I was kind of wondering how to nicely break up with these people. When Stephanie texted me yesterday saying she wanted to stop by, I couldn't say no to her because I simply like her so much! So I'm glad they're taking matters into their own hands. I suck at breakups.

I have a new gross out to share with you. For the first time (there've been a lot of those lately!) I wore my hair down yesterday instead of the usual top knot. I also put real clothes on yesterday; jeans and a pullover sweater. I was trying to act like a real human being for my grocery shopping trip with Kit. Anyway, a nap attack found me while I was laying on the chaise in the afternoon and then I suddenly woke up because my breathing felt weird. I went to the bathroom to see what the issue was and I somehow managed to suck a wad of my hair into my breathing tube at which point it got glued in there from the gunk that I constantly leak. Um...ewwwww! I had to yank it out, and then I had to cut off a hunk of my hair. It was like having a wad of bubble gum stuck in it, for crying out loud!! I'm one step closer to getting a buzz cut like my baby doll has.

One of the symptoms of an under-active thyroid that the doc had mentioned was dry skin. I've noticed over the past few days now that my fingertips keep cracking and bleeding. It effin' hurts! So I hopped on Amazon, yes, Amazon is the second greatest love of my life, and ordered a Burt's Bees hand repair kit. It will be here on Friday. We'll see if it helps.

My MediAlert bracelet arrived in the mail. I am now officially tagged much like a lot of the wildlife in protected areas. ;-P

I've been having a lot of meltdowns over the past week. Poor baby doll has been bearing the brunt of them. I finally figured out last night that I think it's my whole lack of a social life that's dragging me down. I've become way too dependent on my sweetie to provide me with attention and he has his own life to live so it's really not fair of me. Meanwhile, it's so damn intimidating just thinking about going out in public and not being able to talk. So, baby steps. My sweetie invited me to his coworker's house this Sunday to watch the finale of Breaking Bad. I've never seen the show so I politely declined. But then I started thinking that this might be a good stepping stone to get over being intimidated. His coworkers know about my health sitch but I don't know them well enough to be comfortable with them about it. So, it makes for a good test. If that goes well, then there's a Rochester Meetup that I joined way back in January that I was doing social things with for a number of months. I might try another outing with them to see how being speechless goes. I've also started researching both sewing classes and the ASL classes. And tomorrow I'm going to start a daily walking regime. It's time to take the bull by the horns and see what kind of life I have to lead over here!!

And with that, it's time for pain meds and bed. The only thing on my agenda tomorrow is baby doll coming over for dinner. I'm making him an aztec salsa appetizer and honey-lime enchiladas for his main course. Hopefully they come out okay!!

Tuesday, September 24, 2013

September 24

Okay, I'm back from my blog break and feeling somewhat refreshed...........

Saturday morning I drove myself to Walmart. I figured there wouldn't be much traffic out at 7:00 on a Saturday morning and I could test out exactly how impaired I am with not being able to turn my neck much. It went okay but there were two times when I really wanted to look at my blindspot and not just rely on the mirrors. So, my wings are still clipped for a few more weeks as far as I'm concerned.

Saturday afternoon I missed a text from RayB. He wanted to come over and play cards. I didn't get the message until about 4 hours later. Doh! I'm so bad at keeping track of my phone. I think most people have their phones glued to their body. Me, I sometimes have to use the landline to call my damn phone because I forgot where I left it. And that only works if I left the sound on! I lost it once with the sound off. I couldn't find the damn thing for a few hours!

Speaking of messages, when the guys were over for Euchre last Wednesday my phone rang. I let my answering machine pick it up, of course. After it was done JT told me that I might want to change my message in view of the changes in my life. I didn't say anything but I actually sometimes simply play my message a few times in a row because it's the only recording I have of what I used to sound like before all the bad stuff happens. Granted, it makes me cry whenever I do it so maybe it would be healthier to delete it but I'm not ready to do that yet.

Sunday I slept. A LOT. I mostly only sleep in 2 hour increments all night long and after 6 hours, I tend to just get up. So I think the lack of sleep has been building up. I crawled into bed around 4:00 on Sunday and slept in 2 hour increments, for the most part, until 7:45 yesterday morning. It felt good to finally catch up on some zzzzzzzzzzz's!

Yesterday was my appointment with the nutritionist, Joanna. The highlights:
- I showed her my PEG and there was blood around it. Surprised both of us. Turns out I have a little rub spot going on. She gave me some velcro thingies so that I can position the tube to point in different directions instead of always hanging down, tucked into my pants.
- She asked what my weight goals are. I'm currently 115, I told her I would like to weigh between 125-135. She's going to ask the ENT team to bump up my prescription of Jevity. Currently I'm supposed to be eating 5.5 cans a day, I've been eating 6 cans a day, she's going to have them bump it to 7 cans a day.
- She told me that I should also start adding exercise into my regime. She knows I can't do anything too strenuous right now but suggested I start walking every day.
- She also talked to me about the low profile PEG. I have an appointment on 10/3 to get measured for one of those.
- She called down to Nurse JoAnn to see if they had any of the velcro thingies down there. I told her to ask JoAnn if they had any Telfa pads too because I was down to my last one and they're the perfect size for covering up my neck wound. So Joanna took off to pick up supplies but ended up coming back with JoAnn in tow as well. She started gabbing to Kit and I about her upcoming 2 week vacation to celebrate her 30 year anniversary with her hubby, and about her 'empty nest', and how many hours she puts in at work, and stuff about the other nurses, and.......I still can't figure this woman out. Now I'm starting to think that in her own awkward way, she's really trying hard to befriend me. She's not a bad person to get on the good side of, she did bring me a stack of like 30 Telfa pads along with 5 velcro thingies. :-)

Last night I was feeling antsy (it was probably all that sleep!) so I walked over to the family dollar store that's one block over. $60 later I came home with some more lounge pants to try out. They're still not as nice as the original ones but I can make do.

This morning I took a shower AND washed my hair while I was in there. Yep. I combined the two. Why did I feel comfortable doing this? Because part of my Walmart shopping included buying a full length mirror for the downstairs shower. I was able to watch where water and suds were running, and what the trach cover was doing, and was able to keep an eye on things in general. Love it!

Today, Kit is picking me up at 1:00 and taking me to do some Weggie's shopping because tomorrow is the big lunch day! I have 14 of my work peeps coming over to test out a couple of jambalaya and cornbread recipes that I'm trying out. Woo hoo! I also found a peanut butter and jam thumbprint cookie recipe that sounds like a lot of fun. I SO love hostessing. Toby was texting with me yesterday asking if lunch was still on for Wednesday. I said of course. He said that he's already jonesing for another Euchre lunch. I told him that they are welcome to come over any day they want for a Euchre lunch. I just ask that they give me an hour's notice.

Fun stuff: I'm counting down the days to Niagara Falls (14!). I should probably start making up a packlist of exactly what a lary is going to need to travel safely. I also finagled an invite from Kit for something called the Ronald McDonald House tag sale. It's an annual thing that's held in one of the old Kodak buildings. Kit says it's HUGE. And if you donate stuff, they give you free tickets to the preview sale on 10/15. Kit managed to score some of those. And even then, you don't just show up when the doors open for the preview sale, people actually start waiting in line for HOURS before the doors open. Say what?!? I had no idea that this was a 'thing' here in Rochester. I'm really excited to go! I need to make a list of what types of things I'm looking for. I know that an air purifier or two hits the top of the list for me. It would be great if I could pick up a couple cheap to see if they help with my lung situation at all.

 Okay, feed is done, time to go mix my power shot and then I'm going to do up a batch of cornbread ahead of time to make sure at least one of the recipes works okay. :-)

Sunday, September 22, 2013

September 22

Head's up, I'm taking a blog break for a few days. I didn't want anyone to worry when they saw I wasn't posting so I'm making a public service announcement about my absence. ;-)

Saturday, September 21, 2013

September 21

So yesterday was the doctor's appointment from hell. At least in some regards, in other regards it was a great appointment. The appointment was at 2:15. I'm not sure what was going on, on  a Friday, but Kit and I weren't even shown into a room until around 3:00. A nurse came in (JoAnn doesn't work on Fridays), took down a bunch of info and I handed off my usual list of questions to her, most of which it turns out she couldn't answer and I had to wait for Dr. M.

Dr. M and Dr. Priya eventually found their way to the room. Yet another victim has fallen for Dr. M's charms. Kit now understands why I'm so over the moon about this guy. He's just always so positive and supportive when you talk to him, you can't help but feel good.

So, the highlights:

He said that he could see what Dr. V meant about the "break down" of my inner cheek. He said on the bright side, the deeper, inner sutures were holding and he could already see granulization happening on the surface of the wound site so it will eventually heal itself from the inside out and he doesn't think it's going to be a problem.

Q1 on my sheet was about how I'm having a hard time getting the OCL back in correctly after I remove and clean it. It doesn't sit flush and I can't tell if I'm even doing it right. Dr. M ended up telling me that he doesn't think I even need to wear the OCL anymore. He said I can just wear it at night to prevent my neck from oozing gunk into the stoma but during the day, I can just skip it. At first I was thrilled with this! Unfortunately, within an hour or two of being home, I felt like the stoma ws starting to close up on me (likelyall in my head but hey, paranoia doesn't feel good whether it's real or not!). Plus, when I cough, it felt like it was harder to get stuff up because it suddenly didn't have a path to follow up and out. So, I put it back in. It's not like it's going to hurt me to wear it.

Q2 on my sheet was about my stoma being torqued over to the right. Dr. M assured me that it's actually centered and it's just the swelling that's causing it to look so off center right now. As soon as some of the swelling goes down, it will come back to the middle again. He said that he can tell that a lot of the swelling has already gone down because before, my neck was partially covering my stoma, hence the tube they had put in temporarily to keep my breathing path clear. He said now my neck wasn't blocking my stoma at all.

He commented on the ever present washcloth hanging out of my mouth. He asked if drooling was still an issue. I told him most definitely. He said that once radiation starts, it will no longer be a problem. (Yeah, I remember those days). He said that he could give me Botox injections in the saliva glands right now to stop saliva production but he's afraid to mess with anything because healing is going so well right now. I agreed with him. I'm okay with biting wash cloths for a few more weeks.

Most of my neck graft looks okay except for a half dollar sized spot in the middle that has been mushy and still leaks. It turns out that there is STILL saliva from my mouth leaking through a hole in my throat. Dr. M said that the hole it's leaking through is very small though and he can tell that it's getting ready to close up so he's not worried about it in the least. He said to give it a couple more weeks of healing and I'll be good to go.

He also told me that it's okay to cover up my neck now that the colder weather is setting in. He didn't want me to think that I had to freeze and leave the neck graft uncovered. I was relieved to hear this because Dr. V made it sound like I should leave it uncovered but as I stated in a previous blog, I've been bandaging it when I got out in public or when I sit down to dinner with Scott (just doesn't seem right to make him look at that hot mess while he's eating!).

Q5 on my sheet was about canceling the cruise and I needed my attending to fill out one of the pages for me. He said no problem and got his nurse to fill out most of it. He told me that he thought it would be a good idea if I didn't travel for the next year. I said no problem but then told him about the Niagara Falls trip. He totally agreed with my assessment about it being only an hour and a half drive and that it was a perfectly viable little getaway for me and my condition. :-)

He said that he was going to start looking at the calendar and get me set up with appointments with the radiology and medical oncologists so that we can start putting a plan in place for the radiation and chemo treatments. I also went ahead and got an appointment scheduled with the nutritionist while I was there. I go to see her on Monday morning.

Q4 on my sheet was about the pain meds (Roxicet). I told him last year I was on Roxicet from the time of suregery until 2 months after radiation ended. I told him that the nurses got twitchy about it and kept giving me a hard time about refills. I asked if I should be weaning myself off of this stuff right now until after radiation starts or exactly how things should flow. I said that I wanted to avoid nurse twitchiness this time around because it was so unpleasant last year. He was horrified to hear that I was given such a hard time last year. He said I just had surgery a week and a half ago and if I want pain meds, then pain meds I shall have. He said they're there for me if I need them. He promptly wrote out a script for TWO big bottles of Roxicet for me. Have I mentioned that this guy rocks??

He mentioned that he wanted to keep an eye on my TSH levels in regards to my thyroid. I discovered how incredibly useful it is to have the same person bring you to all your appointmnets! Kit immediately spoke up and gave Dr. M the rundown on the appointment we had with the PCP on Wednesday. So, I'm all setup as far as following up on that on my own.

I told him that I haven't used my mister all week long because I've felt really swampy down in my lungs. I asked him if he thought I was using okay judgement with this whole figuring out my lung environment thing. He said the only thing he would change is to make sure I"m using the saline shots when I suction. He said even if I feel wet and swampy, the saline shots will penentrate the deeo lung goop and make sure things stay loose down there. So, I dumped more saline into my lungs last night per his instructions. We'll see how it goes.

I think that was about it for the Dr. M portion of the appointment. Kit commented that he said things look "really good" about 8 different times which she was glad to hear. Dr. M and Dr. V are such polar opposites. Dr. V is like Eeyore from Winnie the Pooh. He's always doom and gloom and worst case scenario. Of course I'm not sure Dr. M and his constantly upbeat attitude is all that healthy either. I told you in a previous blog that he told Scott and I that he was confident that he would not need to take my voicebox and that he had only been wrong twice before about the size and reach of a tumor. I feel like asking him if he's now telling patients that he's only been wrong three times before because I definitely wrecked his original number.

So, he left and we just had Dr. Priya. She went ahead and removed all the staples in my chest. Thank goodness! It feels so good to have those gone! They would pinch if I bent or twisted and since I have 0 body fat, I could actually feel them rubbing up against my ribs and chest bone. Ewwww. She also removed 5 sutures from my neck. Which kind of confirmed for me that Dr. V as talking sutures back on Monday while I was talking staples.

Q3 (and the final question) on my sheet was a repeat. I still wasn't understanding how I was supposed to get my meds refilled. Priya went ahead and wrote new prescriptions for all of them and sent them over to Culver Ridge Wegman's for me. So with that, I'm all set.

Meanwhile, I  had asked the nurse at the beginning of the appointment if I could leave with more Roxicet in hand because I was down to only two more doses in my bottle at home. She said no problem but then didn't do anything about it. So Kit and I ended up having to walk down to the pharmacy and wait for the damn prescription to be filled. It took FOREVER. Poor Kit had show tickets with her honey bunny at 5:00. 5:00 saw us still sitting in the damn pharmacy waiting for this prescription. :-( I owe her huge for missing out on some fun plans with her man for my sickly ass.

I also owe her huge because as we were leaving the exam room, she asked me if I had another OCL at home to wear at night. I said no, why? And she pointed out that Dr. M had removed mine during the exam and it was still sitting over on a side table. OMG! I would have been pissed if I left it there! Not only did I grab it but I asked Priya if I could have an extra one, just in case, which she happily provided.

In the end, Kit and I didn't pull into my driveway until 5:30 last night. My pain meds had worn off an hour or two before that plus the appointment had been a little traumatic with the removal of staples and stitches. I limped/dragged myself into the house. It wasn't pretty.

So that was my appointment from hell yesterday. No actual bad news but man, it just dragged on and on and had some unpleasant physical components to it.

I would usually move on to telling you about the fun stuff but alas, I do not have any fun stuff to report. Now that I know that things are healing up well and I'm finally on the road to recovery, I think I might celebrate by taking another shower this morning. Yes, I know I just took one two days ago but what can I say,  I'm feeling decadent!! 

Friday, September 20, 2013

September 20

Yesterday was by far, the most relaxing day I've had in months. No doctor's appointments, no VNS popping in, no deliveries from Upstate Medical Supply. It was simply a day to scuff around and do nothing. And boy, did I do NOTHING. It felt wonderful. :-)

Did I mention that the paella I made last week was a huge success?? And I had no idea it was so much fun cooking in a wok! Tonight I'm making a steak and pepper stir fry for the man. The recipe isn't actually FOR a stir fry, I just want to use my wok again so I'm making into a stir fry. Ha!

There were a couple of bittersweet moments this week. When the guys walked into my house for cards a couple of days ago they were oohing and ahhing over how good my house smelled (remember I was baking brownies). It kind of bummed me out because I smelled absolutely nothing. Then yesterday I was doing laundry and I scooped an armload of clothes out of the dryer and dumped them in a basket. This caused an uprush of air and I actually smelled the fabric softener! I was so excited! Then I realized I was excited because 9% of the time I have no sense of smell. <sigh>

My friend, ElRay, sent me an e-mail the other day that made me cry. She was talking about how angry she is with Strong because she feels that I'm so "unprepared" to deal with what's going on with my body. She hit that nail on the head, which is why I cried. I DO feel really unprepared. I ended up sending a huge ass e-mail to Michelle, the speech therapist, telling her different ways I can see Strong improving their resources for lary's. I'm trying to get her on board to help me effect some change and tempting her by promising donations of Boogie Boards to her cause. She said she's in, we'll see what happens.

Since babydoll and I aren't going on the cruise, I decided that a couple of nights in Niagara Falls would be doable. We can drive a car there which means I can load the trunk up with all of my equipment and medical supplies. And it's only an hour and a half drive so if something goes terribly wrong, we can be back home in no time. I found a decent, cheap hotel that was offering discount attraction tickets on a bunch of the stuff I want to do like Ripley's and Fear Factory. So, for $416, I will be spending my 44th birthday with a hot man, doing some fun crap in Canada. Damned if I'll let this cancer stuff ruin yet another birthday vacation of mine!!

Scott's great-niece has a birthday coming up. I asked what type of goody I should bring. Here's what was selected: How fun are those?? I can't wait to go shopping and give them a whirl!

Okay, that's about it for today. I'm sitting here killing time, waiting for Kit to pick me up so that I can finally get these darned staples out. I'm going to go work on my new puzzle for a bit..........

Thursday, September 19, 2013

September 19

So, you know they cut my chest open, took a piece of pec muscle, bent it in half going upwards, and installed it as part of my throat. This way, the muscle stays attached to its original veins and there's none of that finding viable veins to hook it up to and checking a doppler thingy every couple of hours to make sure it's still alive, blah, blah, blah. So, there's this huge lump on my left collarbone where the muscle is bent in half. Supposedly it goes down in time. What I find really disturbing is that I will sometimes be patting my throat with gauze to soak up some ooze and it causes the muscle way down near my armpit to twitch. How messed up is that?? Seriously, it's kind of gross.

How's that for starting a blog off with a bang? Ha!

Yesterday was a pretty good day. I decided that I needed something to look forward to other than doctor's appointments so I sent an e-mail out to ~20 of my coworkers inviting them to stop over at my house next Wednesday during their lunch break (I live ~3 miles from work) where I will be busy in the kitchen making a vat of jambalaya along with cornbread. I already have 7 people signed up to come dine at Chez Quinny's. I miss my peeps. It will be good to see some of them. :-)

Since I was sending out e-mail invites for visits, my buddy Jer decided I might like some company for lunch that very same day. So, yesterday he, JT, and Toby all stopped in and we managed to squeeze in three hands of Euchre on their lunch break. Jer and I partnered up and were the big losers for the day. I don't think it helped that I had been up since 3:00 am and I had just taken my pain medicine before they arrived so I was a little spacy. We'll get 'em next time, Jer!!

Hopefully the brownies that came out of the oven while they were here smoothed over all the trash talking that was happening when cards fly at my house. HA!

No sooner did they leave and Kit came to pick me up for my doctor's appointment. Have I mentioned what a godsend this woman has been? I have other people that I can ask for rides but I would be pulling them away from work to do it which makes me feel a little guilty. Not that I should feel any less guilty about pulling Kit away from her leisurely retirement activities. And let me tell you, I got a glimpse of her calendar on her iPad yesterday and for someone that's supposed to be loving the slow and easy life, that's one busy woman! Anyway, I went and saw some new doc, Dr. F, at my PCP's office to discuss my thyroid issues. She said that it takes 4-6 weeks for thyroid meds to settle in and take effect. She was baffled why they were checking my levels on what seemed like a daily basis for a few weeks. I told her that in the hospital they take your blood every single stinkin' night and run every test known to man on it. At least that's what they were doing to me. So she said that she's okay with me being on the 200 mg dose for now. She asked if I've had dry skin, been constipated/had diarrhea, had my girlie thing stop, gained weight, etc. My response was not really. I'm pretty sure the girlie thing stopping was due to the birth control implant. The diarrhea is from being on an all liquid diet plus the Roxicet, and the weight gain thing has been on purpose. So I need to go back mid-October to give them some blood to check and I have an appointment with Dr. K on 10/18 to see how things leveled out on the 200 mg.

Got back home and grabbed the mail. I got prezzies! Kim and Andy sent me a really pretty scarf! Which reminds me, I don't know if I gave a call out for the other scarves I've recently gotten. My friend Karen sent me a gorgeous black scarf with fringe and sequins and flower patterns, it's beautiful! And T got me an assortment of frilly infinity scarves that are all soft and warm. Plus the flowery infinity scarf Sammy had sent me, and I did a little of my own shopping. Amazon had a 12 piece bulk pack of scarves for $10 that I ordered plus I purchased a couple of fancier $12-$15 scarves that caught my eye. All in all, I now own 30 scarves! I sure as hell hope the scarf look works on me at this point. LOL!

I also received a package from JBB. She's been concerned about keeping my Skeletor body warm. She sent me fingertipless gloves and some pure silk long underwear. I felt warmer just looking at this stuff!

I finally received the stoma covers that I ordered from that lady in PA.

Aren't they pretty? Here's the problem though. You can see that they're meant to be worn in the center of the neck and as I mentioned, my stoma is torqued way over to the right. If I wear one of these, I'm going to have to place it way off center to cover the stoma at which point I think it's going to look weird. Again, I need to ask Dr. M tomorrow what the deal is with my non-centered stoma hole.

The rest of the day was pretty mellow. I thought for sure I would zonk at some point in the day but ended up staying up all the way to 11:00.

I'm still having a hard time gauging what's going on with my lungs. I feel like they're moist enough (still a little bit too much so) that I don't need to wear the mister. I wore it for a couple of hours last night anyway and then decided to set up the warm air humidifier that I had purchased last year instead. Had that on all night. I think it was fine for the lung sitch, on the downside though it kept my neck moist all night too and I think we're currently trying to dry out the neck graft so that it can heal. I just can't seem to win!

I was up at 6:30 this morning. Took care of the animals and then decided that today was shower day. I wasn't even sure if I was supposed to get my leg wet yet or not but said screw it and figured I'd play it by ear. It was fine. I'm once again all sparkly clean. Except for my hair. Due to the whole neck situation, washing the hair has to be tackled as a whole separate project from the shower. I'm going to save that for later on today.

Right now I'm done eating so it's time for my power cocktail and then I think I'm going to relax on my chaise with my Wii game. The only excitement planned today, other than washing my hair, is that I think I have some new and fun puzzles arriving today. Woo hoo!

Wednesday, September 18, 2013

September 18 - Part II

Please note that I was not calling out my friend Sandi or criticizing her in any way, shape, or form in my previous post. If our positions were reversed, I'm pretty sure that I'd be patting her on the back, telling her I know how she must feel as well. Statements like that are made to give comfort to people we love and I know that's all that she was really saying. That she loves me.  She just happened to text me some 'comfort' when I was ready to jump off the deep end anyway so it triggered my little diatribe. I love you too, Sandi! No offense was meant! :-*

September 18

Ah yes, it's 3:00 am and my PEG tube is twitching like a mother so I'm up 'feeding' in an effort to make it go back to sleep.

Resolution to yesterday's meltdown: turns out the Friday appointment was canceled in error. The appointment is back on and Dr. M assures me that he WILL be taking my staples out for me. I was so glad to see Stephanie from VNS yesterday. Even if it was just for a reality check. She agreed that leaving the staples in for 3 weeks was way overkill so she called Dr. M's office for me and got things hashed out with JoAnn.

I'm kind of torn about this Visiting Nurse thing. There really isn't much for them to do when they come over. They take my blood pressure, temperature, and listen to me breathe and that's about it. It's not like I need a lot of 'care'. At least not from an outsider, I'm able to do all of my own care for now. But on the other hand,  it's been nice to have someone drop by once a week so that I can hit them up with non-urgent questions like the bump that was next to my PEG tube. And it was great that Stephanie called and rattled the cages of the people who needed it, in my stead. I was typing at her how frustrating it was to stand and listen to that stupid message being left on my machine about the appointment change. I so badly wanted to pick up the phone and ask what the heck was going on but I couldn't. All I could do was sit there helplessly and wonder how I was going to straighten out THAT mess. Hence, the major meltdown.

My friend Sandi sent me a text yesterday saying "Yes I understand. I think about you often and know how much a struggle this is for you.". Of course it's very sweet that she's thinking of me but I had to snort at the rest of it. I don't think anyone can know how much of a struggle this whole thing is unless you're going through it yourself. You might think that you can picture it well and that you have some inkling, but I still think whatever your imagination can come up with is going to fall way short. I challenge all of you to put a piece of tape over your mouth for 24 hours, under no circumstance are you allowed to speak,  and let me know how you do. And remember, being mute is only one small part of what's going on with me. I currently can't drive because I can't turn my head. I'm on pain meds every 4-6 hours because hey, I hurt. I can't smell any more. I can't eat any more. I haven't showered in over a week because I can't get so many parts of my body wet right now. I'm breathing through some gaping hole in the side of my throat and still trying to learn how to keep my lung environment in balance. I wear a mister pinned to my clothing when I go to sleep at night which in turn is attached to a long plastic hose that is hooked up to a very noisy machine. I can't lay down to sleep. I'm constantly oozing gunk which I try to catch by taping bandages at optimum spots on my body but they often fail and I'm walking around in damp, slimy shirts all day long. And..........yeah, I could go on typing for quite some time.

I've added Renee to the Cast. I want to add Karen, babydoll's big sis, but she's totally bogarting on a photo for me. There's a family gathering coming up in a few weeks, maybe I can snap my own pic to use.

So, I had sent a note to Dr. Miller back on Monday:

Hi Dr. Miller,

I just had my appointment with Dr. V. and of course I couldn't think of any questions while I was there but on the drive home my mind was going a mile a minute. 

He took that hateful trach tube out and gave me back my OCL. For the first time in a week I can breathe! I can't tell you how excited this makes me!! He then looked in the stoma hole and said that my tube? valve? something was missing. He said they sometimes fall out and go through the digestive track and that it is no big deal. Meanwhile though, he didn't replace whatever it is that is missing and now I'm wondering, is there a hole in there that's going to accidentally heal up? Will you be able to re-make the hole if that happens?

He looked in my mouth and told me that the part of the inner cheek that he had used in some of the reconstruction was already breaking down (I've learned to hate that term!). Here I was excited that I could actually close my mouth over the weekend and it turns out that's a bad thing. He said we need to keep an eye on it but he didn't say what the repercussions are if my inner cheek fails. Do you know what they would be? Are we talking a third surgery?

I then had him look at my leg. We went ahead and took the saran wrap bandage off of the graft donor site and put a xeroform bandage on it as well as some Telfa pads. He told me to go ahead and change out that bandaging once a day. I'm assuming it needs to heal up a little more before we start treating it with the polysporin? I thought that was the gig last year with my other graft site. I was supposed to put polysporin on it constantly. So, I just want to make sure I'm doing right with all this wound care.

I asked him about the staples in my chest. He said he was going to leave those for a bit. I was surprised. The staples in my leg came out on day 7. Today is day 7 for the chest staples so I just assumed they would be coming out. Do you think that you will take them out at the Friday appointment? They're starting to itch.

Happy Monday!


I finally received a response from him late in the day yesterday:

Just talked to dr van der Sloot and he caught me up on everything as well. 

It sounds like the voice prosthesis valve may have gotten pushed in, but not a huge deal to put another in at a later date once you've healed. 

There is apparently a small area in the mouth where the sutures pulled apart on the surface. However, dr. V is confident that the deeper tissues are healing well. In this circumstance, we just need to wait it out as the wound will heal from the inside out and that gap will fill in on its own. I don't think there are any more surgeries needed for that, though (thankfully!). 

Everyone has their own Voodoo when it  comes to managing a skin graft site. It will heal no matter what you do to it provided that the area stays clean. Polysporin is ok if it makes you feel better, but not absolutely necessary. 

I am not sure why your next appt with me isn't until the 4th, but I asked Jo Ann to get you in before then (either this Friday or next Thursday). We will take the rest of the staples out then. 

Hope this helps! 
Let me know if you need anything else. 


No clue what he means by "rest of the staples". He makes it sound like some of them were removed and some weren't. Whatever.

I was so excited to be able remove and clean the OCL I have in right now. Little did I know.....

So, usually a stoma hole is made front and center of your body in your windpipe. My stoma hole is currently way off to the right. I don't know if this is because everything is still so swollen that it's just torquing in that direction or if they really made the hole that much off center. It's a question I will be asking on Friday (Kit! Take a note and remind me of this, please!). So pulling the OCL out was no problem. I happily scrubbed it all sparkly clean, then I tried putting it back in. Yeah right. I can't figure out how to get the damn thing lined up so that the baseplate is flush to my neck. And to make it worse, I can't remember if it was flush to my neck when I removed it or if Dr. V had this problem too do to the swelling! I have it put in the best that I can. I will be asking JoAnn for an insertion and removal lesson while I'm there on Friday.

I haven't used my mister the past two nights in a row. My lungs are definitely wet and swampy from all the saline I've been dumping in them the past week or so. Here I am thinking I'm dry and clogged which is why I can't breath when in reality it was just the incredibly tiny size of the damn tube they put in. So now I'm REALLY wet in my lungs and feel the need to let things dry out a little before I catch pneumonia!

When I'm just kicking around the house, I leave my neck uncovered. There's one small, mushy area of the skin graft that needs to dry up and heal. As soon as I have company scheduled though or if I'm going out in public, I immediately slap some xeroform and roll bandage on my neck so as not to frighten the villagers.

Since Dr. M told me to do what I wanted with the leg, I've been putting the ointment on. The xeroform alone ends up drying out and then sticks to the graft donor site. I then spend a good 20-30 minutes gently soaking it with water so that I can slowly peel it back off again. What a PITA! At least if I slather it in ointment first it stays moister longer and there's usually only one of two small dry spots to peel up instead of the entire thing.

My furnace has officially been turned on and ran for quite some time yesterday. I also hung the curtain between the kitchen and family room to block out some of the cold air from that uninsulated room. I think I've washed the curtain a few too many times because it's about 5" too short for the opening now. So, it was off to Amazon. (Do you remember what an internet shopaholic I became after last year's surgery?? History seems to be repeating itself!!) I found a thermal insulated blackout curtain and ordered it. Although my finger hovered over the order button for quite some time before clicking. Doesn't $130 seem a bit much for a bleeping curtain?? If it keeps the family room from dragging the rest of my house down into the arctic zone though, then it's money well spent. I really need to just bite the bullet and hire a contractor to put a real door in that doorway. I just hate that it's going to break up the flow of the house. <sigh> Decisions, decisions.

Speaking of kicking the furnace on, I was talking to Kit on Monday and she reminded me that she's on thyroid medication too. She has the exact opposite problem from me though. Her thyroid is overactive whereas mine is underactive. I asked her if the thyroid has anything to do with regulating body temperature and as it turns out, yes, yes it does. So at least I've nailed down a culprit other than menopause for my constant temp changes.

Here's some of what keeps babydoll and I entertained at night when we're not watching the Yankees, football, playing gin rummy, or what have you.

I put the final pieces in yesterday afternoon. It was so much fun that I then hopped on Amazon (yes, shopping AGAIN) and ordered three more. Meanwhile, when babydoll was in Myrtle Beach with his daughter a couple of weeks ago he wanted to buy me a Star Wars puzzle. He couldn't find one so he bought me, and mind you, these were his words, "the next best thing". Yeah, that loud noise you just heard was a sound of pain coming from Jamie when he read that. If you're a Star Wars nut, you'll understand. If not, well, sorry, it's an inside thing.

 I also did some web surfing looking for the yoga pants that I bought at Family Dollar. Didn't have any luck finding them so headed to Amazon (yep, lucky shopping trip #3) and bought a few different pair through there. There has to be some other brand/style in existence that will fit me! It's too hard trying to make do with just two pairs of these things. I'm doing laundry daily! Although maybe today I'll try wearing jeans to my doctor's appointment. I don't think I"m going to have to get undressed for them. I imagine they'll just be taking some blood and asking some questions in regards to my lazy thyroid. So, I can wear real clothes today. Yay!

And on that happy note, I'm going to crawl back into bed with my hot, hot man............... 

Tuesday, September 17, 2013

September 17

Okay, I'm currently sitting in front of my computer, bawling my eyes out. It's not going to be a good day today. I just received a message on my answering machine. I was supposed to be seeing Dr. Miller this Friday for a followup. They canceled that and moved it to Thursday, 10/3. This would be fine except for the fucking row of staples in my chest. I really want to know what I'm supposed to do about them. Will they fall out on their own? Can I pull them out myself? VNS is supposed to come see me today, can they take them out? I have an appointment with some unknown doctor at my PCP's practice tomorrow, can she remove them? I can't imagine  them staying in for another 2 weeks. It just doesn't sound right. I e-mailed Dr. Miller yesterday asking him about it. No response. I just sent another e-mail via the patient portal, we'll see if that gets a response. I'm feeling very abandoned over here.............

Monday, September 16, 2013

September 16

Okay, so it turns out that being able to close my mouth is NOT a good thing. The reason I'm able to do it is because the inner cheek that Dr. V used as part of the reconstruction in my throat has started to "break down". Can I tell you how sick and tired I am of hearing that term?! He said we need to keep an eye on it. He did not say what the repercussions were if it breaks down totally. I was afraid to ask because if I hear the word surgery again I'm going to throw myself off a bridge.

He took the bolster off my neck. OMG. My neck looks so god awful I want to cry. Kit, my driver today, doesn't think it looks too terribly bad........oh hey, I'm home now so I should be able to get the picture thing to work. Hold on a sec.......

Yeah, how the hell do I cover up THAT?!? What a fucking mess.

On the bright side he took out the hateful trach tube and put my OCL back in. For the first time in a week I can breathe! He admonished me for taking out the inner cannula as I knew he would. I just didn't care. And this OCL isn't sutured in so I'm actually allowed to take it out once or twice a day and wash it. Life is so much easier when you can actually breathe!

So, I'm supposed to put polysporin on the crusty bits around the edge of my neck twice a day to help it heal. Once he did that, he said he was done. I was like hey wait a sec, what about my leg? So he looked at that and went ahead and pulled the saran wrap bandage off. We put a Xeroform bandage on it along with a couple of Telfa pads. I'm supposed to change those twice a day as well while it heals.

I then asked him about the staples running down my chest. He said he was going to leave those in a little longer. Not sure why. I'm hoping Dr. M will take them out on Friday, they're starting to itch. The staples in my leg came out on day 7, I really expected these staples to come out today which is day 7. Whatever.

He mentioned that he can't see the valve inside of my stoma. He said they sometimes work themselves out and go through the digestive system. I told him I must have been hungry. Nurse JoAnn said I might want to find something different to eat because those are the valves that are $250 a pop, out of pocket. Ouch! He didn't replace it because it's going to be a while before I'm allowed to attempt to talk. Hopefully the hole doesn't heal over in the meantime!

Lastly, he told me not to lay down flat to sleep at night. I didn't say anything but I haven't been laying down to sleep because I can't breath when I do, so hey, no problem in that regard! And he told me to try to lean to my left when I'm in bed at night.  Not sure what that is all about. Maybe to help that inner cheek not degrade any further?

I've been sleeping on the chaise since it's at a good angle to allow me to both sleep and breathe. I need my back elevated and angled as well as my neck. Babydoll was spending the night last night and didn't want to be in bed alone so, he went on the hunt for something he kept referring to as a wedge pillow.

Here's where I've been currently sleeping:

Babydoll did not find a "wedge" pillow but he did find a squishy chair:

And if you flip it the right way:

Perfect angle for me to sleep and breathe! Woo hoo! Is my man a genius or what? Not to mention as thoughtful as always. Running around the mall on a Sunday, trying to find a way to make it so that I can sleep in my actual bed at night. He continues to amaze me on a daily basis with his kindness. I now know why such crappy things keep happening out there in the's because babydoll was endowed with not only his own share of goodness but about a few hundred other people's shares as well, leaving them seriously lacking!

I think that was about it for the appointment this morning. Kit got to meet Nurse JoAnn and she sees what I mean about her. JoAnn really tries hard to be compassionate and show that she cares but as Kit put it, she has an "edge" to her.

I was sorting through some of the reams of paper yesterday that I've received from the hospital. I found an info sheet about my PEG. It turns out those bumpers ARE supposed to eventually fall off. And right after I read that I looked down and sure enough, I lost a second bumper somewhere without even realizing it. Just one more to go and my PEG will be set.

Babydoll got me set up with my local 9-1-1 dispatcher. The guy told him that if a phone call gets placed from my house, they'll send ANY and EVERYone over there immediately. Ha! I really just need one person to show up with a CPR gig for a neck breather. That would do me.

Okay, let's end with some fun stuff today. Babydoll and I def need to cancel the cruise but we still have a week together in October. What to do, what to do! We batted around some ideas last night for some stay-cation plans. He said we could hit one of the local casinos, like Turningstone. Sounds like fun to me! He also proposed that we do a little hiking at Letchworth. Another banner idea, sign me up! From my side, I'd like to spend a night in Niagara Falls. I know there's some huge outlet mall up that way and I really want to do some of the commercial stuff at the falls like the Ripley's museum and the Fear Factory. I had already booked Jamie to spend the week with the furballs so maybe my sweetie and I could skate up there for a night or two. More locally I haven't been to the zoo in forever and it's been years since I last explored Artisan Works. I also want to go get my pumpkins that week and get them carved for Halloween. I've already started loading up on candy for the trick or treaters. Hmmm. I wonder how that's going to go this year with me not being able to talk. I should probably make a sign to wear around my neck letting people know that I can't talk...........

The wonderful, fantastical Kit was kind enough to take me to Wegman's after my doctor's appointment this morning so that I could grab some ingredients for a new recipe to try out on my oh so delicious man tonight. Tonight, I'm making Paella! And if that wasn't enough fun having an all new recipe to try out, according to the recipe, I get to make it in a wok! Hot diggety! I believe I bought myself a wok sometime in the last year or two at a garage sale. I just need to go dig it out from wherever I stashed it. Meanwhile, I'm super stoked about this cooking adventure tonight! It's the highlight of my week!

Sunday, September 15, 2013

Cast of characters

I was thinking that it might be nice to put some faces to the names that I mention on here so I've created a list of the 'cast' in my life. If I forgot anyone, let me know! And a few of these photos I had to shanghai from Facebook because I either didn't have a pic or I didn't have anything recent. I hope that was okay!!

Andy and Kim. My friends who moved to Idaho and now send me some really awesome care packages and who are always checking up on me.

Babydoll (aka Scott). The hottest, sweetest man to ever hit this world!

My boss guy. One of the top 3 bestest bosses ever!

Chris S. who was kind enough to send me all sorts of info on ASL and Toby who happily gives me a ride whenever and wherever I need it.

Dr. Karen. My woman in the field who gives me the inside scoop when I need it and is a most excellent and entertaining pen pal!

El. My friend that brings some kid time into my life with her adorable Blueberry and keeps me occupied proofreading her college assignments. :-)

ElRay. My friend who was lost for a while but is now back and offers some really great support!

Freedom. The bubba butt who makes me laugh.

H. The friend who has created a company called HHAT specifically to meet my chauffeuring needs. Kunkel. My friend who has no problem running a nail file to the hospital for me and washing oogie blankets. Maynard. My work honey bunny who recently became employed by HHAT. ;-)

Itty: The furball that takes care of all my mice, bird, and squirrel needs.

Jack and Daisy. The last of the furballs that make me smile.

Jamie. The friend extraordinaire who pet sits, does handyman work, and keeps me company when babydoll is unavailable for things like the 98PXY Summer Jam!

JBB. My NYC friend who keeps me laughing with her off the wall e-mails and more recently the hat modeling gig I've assigned to her.

Judy. My caving friend and inside contact at Strong.

JT. Another friend extraordinaire who is always there with the most inappropriate jokes that he can think of to snap me out of my malaise.

Kit. The all time bestest boss ever who converted over into a truly wonderful friend that I can talk plainly and simply to, no matter the topic.

Leo. My second work Mom.

Lisa. My first work Mom.

Peg. My caving friend who also chauffeurs and has offered up pet services.

RayB and Jer. Two work buddies who are always there, willing to listen. And in RayB's case, get shanghaied into bringing me home from the hospital the first time around because Toby forgot and rode his bicycle to work. Doh!

Renee. Sammy's MIL and a fellow cancer survivor who never seems to run out of pep talks for me. :-)

Sandi (on the left). Long time friend who let's me commiserate via text when I'm feeling blue.

Sam and the family. She's been in my life since I was 16 years old and I cannot imagine her ever not being there for anything I might need.

T. The long time friend that adores my cooking and is always giving me little 'thinking of you' gifts to lift my spirits.

William. My work dad who told the story about the mouse who made butter.

Saturday, September 14, 2013

September 14

Last night I was able to close my mouth! I was so excited! Mind you, I couldn't actually close my teeth, my cheek is still in the way but the fact that the swelling has gone down enough to allow my lips to seal together is still an accomplishment!!

I want to give a shout out to my Aunt Nancy in this blog. I finally sat down and went through my mail last night. She sent me the sweetest card. There's nothing better than receiving a "blank" card where someone has actually sat themselves down to hand write you a message from their hearts. Talk about a pick me up for the week! I love you, Aunt Nancy!

Things are a bit slower paced with this arrival home from the hospital. Yesterday I unpacked and I tried yet another new burrito recipe out on babydoll and Jamie. That was pretty much all I had energy for. The house could use a good once over since I've been gone a week but it's going to have to wait for me to not feel quite so wiped out.

I just sent Dr. Miller an e-mail. I've been a bad Quinny:

Hey Dr. Miller,

I am once again having some woes over the weekend and I'm now fearful that I'm going to be in trouble at my 10:00 appointment on Monday with Dr. V. Both he and Dr. O told me not to touch my neck or leg and that I should not remove my inner cannula. Well, I've done it all before Saturday was even halfway over.

- I simply cannot breathe with the inner cannula in place. Dr. V said that if I leave it out and the outer cannula gets clogged, I'm screwed because the outer cannula is currently sutured in place and it's part and parcel with the skin graft on my neck. I'm cleaning the outer cannula every 2-3 hours in an effort to ensure I don't accidentally suffocate myself over the weekend. Would kind of suck after all the effort that's gone into these surgeries that are trying to prolong my life. But obviously I feel it's worth the risk simply so that I can breathe. And I believe that Dr. V will be switching out this hateful tube on Monday and letting me go back to the OSL tube that I had in prior to the second surgery, which would make me a very happy girl.

- This morning I noticed that the bolster was half hanging off of my neck. It looks like one of the sutures has once again let loose. I wrapped a gauze around my neck to hold it in place. Right after surgery someone else had wrapped a gauze around my neck and Dr. V got hugely ticked when he saw it and immediately cut it back off. He said he didn't want ANY pressure on the left side of my neck. He told me that I should be watch dogging it and to not let anyone else wrap it. And here I am wrapping it myself! I just don't know which is the lesser evil. Wrap it and keep the bolster in place or leave it unwrapped and let the bolster fall off??

- Lastly is the leg. It was really stinging me every time I walked. I finally unwrapped it a little and it looks like the saran wrap bandage thing has started to peel at the top and has left an inch of my "road rash" out in the open. Meanwhile, it bled and the gauze was dried up and stuck to it which is what I felt pulling and stinging when I walked. So, I moistened it with a little water and got the gauze off. I then put a sheet of that Xeroform yellow petroleum stuff on it, and then re-wrapped with new gauze and new ace bandage. That only lasted 5-6 hours and then the Xeroform dried out and I was back to feeling a pull when I walked because it was once again stuck to the leg. I just re-wrapped again, this time I used a Telfa pad against the exposed part, then gauze, then ace bandage. Not sure how long this iteration of bandaging will last. Guess I'll wait and see.

So, I've touched everything, and done everything that I was not supposed to. Do you think I'm making okay decisions over here? Do you want me to do anything differently until I get in on Monday?
So, we'll have to see how he responds. I'm really trying to do the best that I can over here. Why do they keep sending me home with 'fixes' that fall apart? I feel like I'm being tested!
Even with the inner cannula removed, I feel like I can't prop myself up high enough in my bed to keep breathing comfortably so I slept on my chaise last night. I even moved the darned mister down here so that I can continue misting as much as I'm supposed to. It's pretty darned cozy down here in the man-cave I've created for myself. I don't mind spending my nights down here at all. And the chaise is big enough that babydoll and I can cuddle up on it together which is exactly what we did last night to watch the Yankees game. Daisy joined us which had me worried about babydoll's allergies but he said he was okay. And Freedom tried to join us as well. Ha! I love when 75# bubba butts seem to think in their mind that they possibly only weigh 8-10 pounds and qualify as lap dogs. I had to tell him 'no' 4-5 times before he gave up trying to join us on the chaise. I think he and Jack are spoiled with Jamie staying here so much because he has no problem with the boys sleeping with him in the bed and the bed in the spare bedroom is low enough that even with Freedom's arthritis, he can still manage to get up on it. So, they've been getting way more cuddle time that they're used to.
Jamie installed the light fixture in the man-cave. It looks awesome! He also did some techy setup stuff on my little entertainment area in the cave. ie: he brought over a cable (HMI?) so that I don't have to constantly have to choose whether to have my Wii plugged in or my Bluray plugged in. They are now both plugged in. He also setup the Bluray with my wifi so that I can stream Netflix. Gotta love a pet sitter who is also a handyman who is also technology savvy. I'm telling you, this guy is the entire package! I need to find a 25-30 year old worthy of dating such an absolute sweetheart.
Speaking of sweethearts, mine came over to see me for a couple of hours today. He took me Wegman's shopping so that I can continue to play in the kitchen for him. Tomorrow night I'll be trying out a salsa chicken rice casserole on him. Since the cruise is now out he was trying to think of something new to get me for my birthday. He decided on something but needed my permission for it. He's going to have his friend Geoff install the humidifying system on my furnace for me. How awesome is that?? He felt bad that it's not a very 'fun' birthday gift. Screw fun, anything done that makes my life a little easier with all the health changes I have going on will be considered the best gifts EVER! My friend T ordered me some really pretty ruffle, infinity scarves for my birthday. She sent me a link to see if I liked them before she ordered them. They're gorgeous! I can't wait to get them!
Speaking of scarves, I wore one to Wegman's today to cover up the mess happening on my neck. It looked pretty darned sharp, if I do say so myself. Although, I should have suctioned right before walking out the door. I ended up with the scarf mostly off before we were finished at Weggie's because I was having some breathing difficulties. I suctioned as soon as we got home and brought up two large clots. So, now I know. 
I keep trying to figure out the whole tube, suctioning, misting, clot thing. I think the reason I'm bringing up so much gunk right now is because my lungs are currently open to the elements. The elements being my dusty, furry house. So there's a lot of stuff going directly into my lungs that probably shouldn't be. I think once the stoma heals and I get fitted for whatever I'll be wearing, I will then be able to wear an HME inside my tube which is a heat moisture exchanger. This will help keep my lungs warm and moist which will allow me to cut down on wearing the mister, and it will also filter out debris and contaminants from the air before they hit my lungs which will make the clots happen a lot less often. At least this is what I've figured out in my mind. I should really ask Michelle what the whole progression of this thing is.
A VNS named Leigh came to see me today. Not that there was much she could do since we're not allowed to touch any of the bandaging (Ha!). She DID weigh me and I'm now up to 118 pounds. Woo hoo! She's going to send Stephanie back over on Tuesday to see how I'm doing after they've taken off all the bandaging on Monday.
I think that's about it for today. I was sleeping in 45 minute long increments all night long last night up until my final increment where I slept 2 solid hours. Man, that felt good! Part of my problem is that the hospital was feeding me at 6 AM, Noon, 6 PM, and midnight. So, my tummy is now trained into that schedule and starts cramping at midnight. I now have to train it back to only 3 feedings a day with 1 CBD if I'm feeling especially desperate. Anyway, the point being, I think I'm now due for a nap. :-) Zzzzzzzzzzzzzzzz...........