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!!