September 6

I don't know if there are any Lost fans out there but I really liked the episode (heck, it might have been a scene in the pilot!) where Jack told Kate that it's okay to be scared. He said that he sometimes gets scared when he's performing surgery and so he steps back and counts to 10. For those 10 seconds he lets his mind run around screaming in absolute sheer panic and terror, then once he hits 10, he puts the fear away again and gets back to business. I'm the same way with my depression. I've had a lot of crappy stuff happening for a year and a half now. My life keeps changing in huge not so positive ways. I'm having to constantly duck, and weave, and bob, and tackle head on whatever health challenges have barreled down the chute at me. This can be wearing, it's obviously not a happy situation, yes, I wish I could hop in a time machine and go back and change things so that there's a different outcome but........as my boss guy loves to say........it is what it is. So, I indulge myself here and there. I let myself have a day where I'm completely bummed, I kick around the house saying 'woe is me', I shed tears off and on all day, and get the whole mess out of my system. Then the next day I put it away again.

So, today is a new day. I'm really loving this cooler weather we're having! I know a lot of people are likely sad to see summer go but fall has always been my all time favorite season. The smell of wood smoke, pumpkin carving, my birthday, watching the salmon run, raking leaves, apple picking, handing out candy on Halloween, ahhhh.....it's the best!

I took a list of questions in for the doctor yesterday. Below is what I had typed up. Dr. Brendan is the doc who ended up answering the questions for me. Responses/notes are in blue.

Q1) My boyfriend was a in a car accident last summer and had to have 3-4 surgeries on his hand. Each time, they left the stitches in for 10 days, and he’s healthy. I get stitches put into my neck, I’m ‘malnourished’ according to the hospital paperwork, and my neck tissue has been previously radiated which I’m told slows the healing way down, but my stitches were removed only one week after surgery. Why do I feel like I’m missing something? He said that even if the stitches had been left in for another week, it would not have made a difference. The skin wasn't healing at all after a week out which is why the entire incision reopened. I call bullshit on this one. Like I said, my incision opened last year too (pre-radiation!) and ended up healing itself. And the right hand side of my current incision where the cut goes up and down and not side to side, healed up just fine. I really think they could have done something here. When it opened back up they should have put a drain back in and then steri-stripped the incision closed. Last year I had two drains in my neck for the fluid buildup. This year they only had one drain in and Dr. Brendan even commented himself that it didn't seem to be doing its job.

Q2) And as a follow on, what are we going to do about the neck thing? I’m assuming the ‘wound care’ I’ve been doing was temporary and now you will sew me back up? Dr. R mentioned something in the ER about a demarcation happening between the flap and the cut in my jaw? He said that might be why my neck is filling with fluid. Overflow of saliva through the crack? He wasn’t sure though. He said it doesn’t seem like the demarcation goes all the way through. As mentioned in the previous post, I guess they're going to let it heal into some huge ass scar and likely do a skin graft. Where the hell is Dr. Vega when I need him?! Nothing was said about the demarcation or the saliva or whatever.

Q3) I will be running out of Roxicet this weekend. Am I allowed another refill? Hopefully this was called in yesterday.

Q4) Speaking of meds, it’s unclear how long I’m supposed to be on all the meds I was sent home with. It looks like some have refills while others don’t? Can we please review so that I feel more confident about what is going on? Dr. Brendan didn't respond to this request. I think he decided there was no point since I'm being admitted back into the hospital. He called and left a message on my machine last night though. I ended up giving them four more vials of blood while I was there yesterday so they could run the pre-op labs again. I guess my thyroid levels are still really high so he asked me to start doubling up my dose of thyroid medicine that they sent me home with from now until surgery.

Q5) The reason I went to 3 different doctors back in May was because I had a continuous earache going on in my right ear. Since that was very close to the previous cancer site I was freaking out about it. So, the second tumor was found and I assumed the earache was caused by the tumor putting pressure on something that it shouldn’t be. My expectation was that I would wake up from surgery and not have an earache any more. This has not been the case. Before the earache was a constant level 1-2 pain that would spike up to level 3 here or there. Now, it feels fine and then suddenly it shoots out a level 4-5 pain that just about takes my breath away and throbs for a full minute. Any idea what’s going on with the ear? Once again he said he would take a look at my ear and once again it got lost in the shuffle. He did say that the pain probably had something to do with the recent surgery and would eventually subside. Hope he's right.

Q6) Did I get a PEG that allows me to eat things other than Jevity? ie: I would love to supplement my diet with Carnation Instant Breakfast Drinks if they are okay to put through the PEG. YES. I can put CBD's in my PEG. He said that some people like to stick cheeseburgers in a blender and put those through their tube as well, he asked that I please refrain. I told him no problem. :-)

Q7) I’m told that the PEG tube needs to be replaced every 3 months. How is that tracked? Will I be sent a reminder post card or is it something I should actively follow up on every 3 months? He asked if Dr. So and So had placed my PEG. I told him I had no idea who placed my PEG. He said that he would get me in touch with Dr. So and So and she could assist in the follow up care of my PEG. Since he forgot my Roxicet, he probably forgot this too so I might ask again when I finally get my appointment with the nutritionist.

Q8) The PT at the hospital gave me exercises for my neck (which I haven’t been able to do because of the incision problem) but nothing for my leg. I’m hoping that just by going up and down all the flights of stairs in my house numerous times a day, my leg will start bouncing back. Do you agree with this assessment or is there more that you think I should be doing? He was surprised to hear there were any problems with my leg. I told him that I currently can't squat down because things feel really tight. He said that sounds normally and that any exercise I do will help my leg get back to norm.

Q9) Is Neosporin the same thing as Polysporin? Yes. Is the oral rinse I was prescribed the same thing as non-alcohol mouthwash? Yes. I asked these questions because I'm running out of both the prescriptions they gave me and wanted to make sure I knew what to purchase as replacements.

Meanwhile, I had questions about the upcoming surgery percolating in my brain all night. Since Michelle is the only member of my team who game me an e-mail address, I sent her an e-mail at stupid o'clock this morning. Here's what I wrote:

Hi Michelle,

I know you're not the correct contact for the questions I'm about to ask but you're the only member of my ENT team that provided me with an e-mail address so I am going to lay my questions at your feet and you can do with them what you want. If you're too busy to hunt down answers for me, that's totally understandable, and I will not be put out at all. Or if you can maybe spare a minute to forward my e-mail to Dr. Miller, Dr. van der Sloot, and Dr. O'Brien, it would be hugely appreciated.

So, as you probably know, it would seem parts of my flap are failing as well as my neck being a hot mess. I'm heading back in for surgery on Tuesday. I just don't really know why. I understand that there is dead flesh involved that needs to be removed because it's unhealthy to leave it there. And Dr. V is worried about saliva leaking into my neck because saliva has digestive enzymes in it which won't be good if they come into contact with my carotid artery which is currently exposed. And it sounds like a skin graft may be in order to fix whatever the hell happened to my poor neck. But.....

Dr. V is also talking about potentially replacing the whole flap, this time with pectoral muscle which is sturdier but not as easy to shape. This is where I get a little lost. Why is it so important to install a flap? What exactly are the consequences if there is no flap? Do I automatically die? I guess I don't understand the purpose of the flap. Is it to allow me to be able to eat, swallow, and talk? I definitely want to be able to swallow my own saliva again at some point in time, walking around with a washcloth in my mouth to catch drool for the rest of my life is an unacceptable loss of 'quality of life' in my book. But as far as eating through a stomach tube for the rest of my life, I can live with that. And as far as not being able to talk ever again, that's a slightly bigger adjustment but still one that I can live with. So I guess my question is, am I going back under the knife, getting yet more body parts cut out and moved around, simply so that I will have a chance to eat and talk again?

Cathy

I will keep you posted on any response that I get.

I'm still struggling with Nurse JoAnn. It was super sweet of her to offer up a slew of stoma covers to me. I was very excited about it. Then later on in the appointment she made 3-4 comment about how awful I smell which did not give me warm fuzzies. I guess the rotting infection in my neck really does stink though. Thank god I can't smell!! Supposedly she's going to have Dr. Brendan prescribe something that will help with the smell. I'll have to see if that's one of the prescriptions that shows up tomorrow at Wegman's. Then when all was said and done, she walked me down the hall to the lab so that I could donate yet more blood and upon dropping me off she wished me luck and then hugged me. Which was awkward to say the least. Stranger danger touching me. She actually hugged me twice because I didn't really respond the first time, I was so surprised. She didn't get a huge response from me the second time either though because I just felt weird. But whatever, I guess it's one of those situations where she kind of rubs your fur the wrong way but her heart is in the right place.

My toothettes arrived yesterday! I was so excited to see them! I don't know if I mentioned but the ropey saliva is back. I had it after radiation last year which made sense, radiation burnt the hell out of my mouth so my mouth responded with super thick gummy saliva as protection. This time the surgeons were in there yanking teeth, splitting jaws and whatnot, my mouth has geared up its protection plan again. Unfortunately this gunk is obnoxious as hell and I'm cleaning it out of my mouth 5-6 times a day. Sometimes the water pik is able to wash it out of there but I'm using it on a really low setting so as not to damage any stitches or whatnot in my mouth so it's not always effective. But the toothettes are perfect for swiping that crap right out of my mouth! My only disappointment was the quality of the toothettes I bought. The ones the hospital gives you have solid plastic sucker sticks so you can actually re-use the toothette through out the day and open a fresh one every morning. The ones that I ordered have a paper sucker stick, just like on a real lollipop. So you use it once and it starts disintegrating so you have to dispose of it immediately. I'll have to try ordering a different brand from Amazon next time around to see if I can find the plastic stick ones. I went in and read a bunch of descriptions thinking they might list that as part of the specifications but nothing about the stick material was listed for the 5-6 that I looked at.

One of my fears came true yesterday. I sat down on the couch in the waiting room in the bloodwork lab and somehow my PEG tube cap popped open. I suddenly felt a wet spot which is how I discovered it had opened. Mind you, this tube is 7" long so I tuck it down inside my pants. I hurried up, fished it out, and put the cap back on. Alas, I suddenly knew how it felt to be a man who didn't quite shake it enough at the urinal. Sheesh.

I'm going to end this with an animals are funny story. Whenever I feed I hook myself up to the IV pole and then roll it around with me as needed. This scares the crap out of my 75 pound pit bull/lab mixes. They hear the IV rolling in their direction and they run away, cowering. The damn cats on the other hand fully ignore me and the IV pole. If Daisy happens to be napping in the middle of the hallway, there's no way she's moving just because my pole and I want to get through. I have to slow way down and maneuver the wheels around her lazy, fat butt to get past her. She doesn't even open an eye!! Animals are weird.