July 26

Yesterday was pretty damned stressful. I was up at 5:30 in the morning, nauseous as hell, got my girly thing, had diarrhea, and thought I was going to keel over from sheer anxiety. Luckily baby doll came over around 9:00, and climbed into bed to hold me and everything simmered down for a while.

I drove him to his surgery at 11:30. They called him back at noon but he still wasn't prepped by the time I had to leave for my own appointment so his sweetheart of a sister, Karen, took over from there. I left the surgery center at 12:10. My appointment was supposedly only 4 minutes down the road. Yeah, right. I didn't realize the damn center was right INSIDE the hospital. I was looking for a separate building. I was also looking for a sign. They had signs posted for every other thing like the School of Dentistry, and Sublot B for Campus XZ and other stupid crap, but there was not a sign for the Wilmot Cancer Center. Justin, my date for my appointment, finally called me and told me that he parked in the hospital parking garage and was in the process of looking for the cancer center. I decided to take his lead. I parked my car at exactly 12:45. I then called the cancer center to let them know I was running late and to ask where they were which is when I discovered they were in the hospital itself, and JT discovered it around that time too. When all was said and done (meeting up with JT, registering ~ 3 different times, and finally being escorted into a waiting room) I was a good 20 minutes late for my appointment. Grrrrrrr. I hate being late.

So, Vernetta weighed me in, took my blood pressure and all the usual fun stuff. Then I was put in a room where Ann, the nurse coordinator, came back and had a little conversation with me. She wanted to know what I did for a living, if I've been getting any speech therapy, who I lived with.....when I told her I live with two dogs and two cats that set her off on a convo about her 20 lb. Maine Coon cat. I think the whole light-hearted back and forth stuff was just to put me at ease. She then asked me what I expected from this appointment. I told her that I was hoping Dr. M was a slightly better communicator than Dr. C because I had questions and I never seem to get a chance to pose them or discuss them with Dr. C. She said that not only is Dr. M a good communicator, he's also very kind. I thought that was an odd comment until later in the convo when I mentioned that Dr. C feels that he and Dr. M are the two best head and neck guys in Rochester, she got a little wound up and said there were actually 4 amazing head and neck guys and three of them work there at Strong Hospital. I also found out that she used to work for Dr. C many years ago and I got the feeling that she doesn't muchly like him. Fun stuff!

Then Dr. Ryan came in. I missed what his last name was but he said he's a resident, which according to the doctor I keep in my back pocket (<3 Karen!) that's a step below an attending.......I think. So, I got to talk to him for a bit. Went through my medical history. He looked in my ears, up my nose, in my mouth, and stuck his fingers down my throat. REALLY unpleasant. I was gagging, pushing at him, and squirming away from him. I told him they knocked me out to be able to do that to me last week, for crying out loud! I was able to ask him a few of my questions. I asked him in what manner the cancer would likely kill me if I let it go. He said all of the ways I have imagined could actually happen. Glad to know my rampant imagination is on target. Ha!

Finally, Dr. M came in. Now HE is pretty damn hot. I might need to snag Kunkel for another appointment if I get to see him again because I think she'll practically drool over him if she thinks Dr. C is so fine. Or she might decide to flash boob again. Maybe I should leave her home.....

Anyway, the first words out of Dr. M's mouth were "Well, this SUCKS.". I like him already. He numbed me up, and he also stuck his fingers down my throat. Didn't bother me a bit. I gave Dr. Ryan a 'look'. Then Dr. M and I started a convo. I didn't take notes so I'm just going to summarize what I remember. JT took notes and he still has access to my blog so he said that he would chime in if he thought I missed anything important. Dr. M's basic attitude was "Let's go after this thing....hard.".

- My jaw would definitely need to be split. No robotic arm surgery option for me. I asked why they had to go in through my mouth. Why can't they go in through my neck? (5-6 of you have asked me this now so I was finally able to submit the question and get the answer.) He said it's for visibility. They will be able to see the tumor, all of the tumor if they go in through my mouth. Visibility would be very poor if they went in through my neck and they might miss some.

- My jaw will work just fine after surgery. The muscle that works my jaw will not be affected.

- Supposedly, the scar from splitting my lip down the center heals up really well and often you can't even tell there's a scar there. I'll believe that when I see it. I saw the pictures at Dr. Vega's (the plastic surgeon) and it wasn't pretty, but whatever, I'm not currently worried about pretty. I'm worried about functionality and life span. Dr. M said he would marry up the scar that runs down from my lip, with the neck incision that was made previously to minimize more scarring.

- Radiated flesh heals much, much slower than healthy flesh. Dr. M said that I will have saliva leaking out of my lip, jaw, neck incision for a while after the surgery but that it will be a temporary occurrence.

- My voicebox. Currently, the cancer has not reached my voicebox but it is creeping in that direction. He said that once they get in there, the whole game could change if the tumor has spread further than what the scans have been showing. He said they really don't know what they're dealing with until they open me up and see if for themselves. He said that they will likely need to remove 2/3 of the base of my tongue in order to remove not only the tumor but a big enough margin of good flesh too. He said that if for some reason they need to remove even more than 2/3 of the base of my tongue, they would then remove my voicebox as well even if the cancer hasn't reached it. He said that's because once you remove that much of the tongue, the voicebox will cause me to constantly be aspirating my own saliva which will lead to constant pneumonia and other lung infections. Along with 2/3's of the base of my tongue, he said they will be removing part of the wall of my throat as well.

- A feeding tube (or PEG is the official name) would definitely be needed permanently.

- He doesn't feel the trach would be permanent. I believe he said total recovery time from the surgery would likely be 4-6 months. He said it could take up to 12 months. I can't remember if by recovery time he was talking about the trach coming out as well. So, the trach would only be in for 6 months, 12 months tops? Maybe JT remembers....

- He feels that after surgery I should then go back for both radiation and chemo. He said this cancer is obviously VERY aggressive so we need to be aggressive right back at it.

- He wants me to start speech and swallowing therapy before I even go in for the surgery. He thinks it would be super helpful.

- He also asked me if I was already working with an oncologist. I said not yet but my boss guy just hooked me up with contact information for his sister in law who is a PA at Interlakes Oncology so I will be e-mailing her this weekend to start a conversation.

- When Dr. M was physically checking me out, he commented that my left vocal cord isn't working. Say what?? He said it's a little odd since all my cancer stuff is on the right side of my head but he said that he has sometimes seen where radiation treatments can cause this to happen. I didn't think to ask him if it was permanent or not. I would assume yes since radiation ended back in September but I still only have half my taste buds at this point so maybe not.

- Dr. M agreed with Dr. C's assessment that there's no guarantee that the surgery will be a cure. But unlike Dr. C, Dr. M's attitude was, why not fight? He very firmly believes that at age 43, I should be giving this whole thing my best shot. He said it's great that it's confined to just the one area and hasn't spread anywhere else and he feels it's perfectly operable.

- I then also talked to him about just getting chemo, rather than reaching for a cure, just out of curiosity. He said that if the tumor actually reacts to the chemo, it would probably buy me up to a year before it killed me. If the tumor did not react to the chemo then it would be less than 6 months before I kicked it based on how aggressive this tumor is.

- I then asked him when I should be making the decision to have surgery. He said "not today, but sometime in the next couple of weeks. Don't let the decision drag out for weeks on end."

So, that's about all my poor addled brain can recall. Dr. M sure does give a good pep talk. I walked out of there ready to check in to the hospital right then and there to just do this thing! Meanwhile, I have a follow up appointment with Dr. C next Wednesday. I'm already feeling a little anxious about it because I kind of want Dr. M to do the surgery now, not Dr. C. Not because I don't think Dr. C is qualified, I know for a fact that he does excellent work, but you wonder how much a surgeon's attitude affects what goes on when a patient is under the knife. Since Dr. C has been kind of a bummer about this whole thing, will he not be as careful because he already laid out the worst case scenario for me and knows that he won't be failing any expectations that he's given me?

I had actually been leaning back towards the surgery option even before my appointment with Dr. M. I was discussing it with baby doll the other night. Dr. C keeps talking about my quality of life being so horrible after the surgery but I started thinking that that's awfully subjective, isn't it? How does he know what I would consider a poor quality of life? I don't give a hoot about eating through a feeding tube for the rest of my life. I've been struggling to eat for the past year anyway and most of what I manage to eat tastes like dirt. Eating has become a chore rather than a pleasure so I can't say I'm going to miss it too awfully much. I would be super bummed to lose my voice but heck, JT keeps saying it would be a huge improvement. ;-P I would be happy if after the surgery I can still play games on my Wii, I can still cuddle up in bed with a cat laying on my chest and purring, I can still lay in my hammock in the backyard and feel the sun on my face. So, I really need to have one last convo with Dr. C and then I believe I will be setting the surgery option in motion sooner rather than later. Stay tuned!

Oh, and to finish up my day, I raced back over to the surgery center after my appointment with Dr. M to see the love of my life. He was still a little groggy coming out from under anesthesia but I missed the really good stuff. I'll have to ask his sister if he did any more Austin Powers impersonations when he first woke up. He was pretty hilarious last time! I think they finally released him around 3:30, we got all of our drug scripts filled, and finally made it home around 5:30. I got him situated in bed with his arm elevated , exhausted but happy that everything was finally finished. A quiet night was spent watching movies (OMG Movie 43 was terrible!! Although babe thought it was hilarious. Whatever. There's no accounting for taste.), snuggling, and appreciating the fact that we're together, and for today all is right with the world.:-)