Tuesday, July 30, 2013

July 30

My work phone rang at 3:45 today with Dr. C's name on the ID. It was Becky. She said she was calling to see if I still wanted to keep my appointment tomorrow morning. I told her I definitely wanted to keep it, that I wanted to discuss surgery with Dr. C. She said that I wouldn't actually get to see Dr. C, I would be with Dr. B but Dr. B is well aware of my case so all should be well. I said okay. We hung up.

I then sat there and stewed for half an hour.

I called Becky back and told her that I was really expecting to talk to Dr. C tomorrow, and I wasn't sure that talking to Dr. B was going to cut it for me. She said no problem, let me fix that for you, and started looking for an opening with Dr. C. I interrupted her and told her that this was kind of awkward but the reason I wanted to see Dr. C is because I'd like Dr. M to do my surgery but I feel like I should talk to Dr. C about it before I move forward and that I've been feeling bad for a handful of days now because I basically feel like I'm "breaking up" with Dr. C. She immediately shushed me. She said that it's my body and my life and that I should do whatever makes me most comfortable. She said that everyone in Dr. C's office only wishes the absolute best for me. She then said that she would cancel my appointment for tomorrow but that she would have Dr. C call me tonight.

Dr. C called about an hour ago. I told him the meeting with Dr. M went great and that I walked out of there wanting to schedule the surgery immediately. He told me that he holds Dr. M in the highest regard and that he knows I'll be in the best of hands and he told me that I shouldn't feel like I'm "breaking up" (yeah, I can't believe Becky told him I said that!!) with him. He asked what Dr. M said he was going to do. I told him that Dr. M pretty much told me all the same stuff that he, Dr. C, had told me. He then asked me how I was doing otherwise. The answer is fine, of course. I asked him how I go about making this change. Do I just call Dr. M and ask him to put me in the books? Dr. C confirmed that that was all I needed to do. He also said that he talks to Dr. M just about every week so he will be keeping an eye on me anyway. He then wished me luck and we hung up.

So, that's that. Tomorrow I call Ann and ask her to get the ball rolling with getting the surgery scheduled with Dr. M ASAP.

Other sundry health stuff.......

I tried eating a miniscule piece of french fry drenched in gravy on Saturday and spent 5 minutes choking on it in the bathroom. With that, I have officially given up trying to eat food. I'm back on full liquids only. I'm even crushing my Vicodin and putting it in juice rather than splitting the pills in half and trying to take them because even they were getting stuck more than 50% of the time.

And I've been staying away from the scale because I just really don't want to know. I was shopping for a pair of jeans last weekend and grabbed a size 4 off the shelf and had to exchange it for a size 2 after a trip to the fitting room. That's not good. 'Nuff said.

My ear ache has been getting worse. Sometimes within an hour of taking the Vicodin it's back to aching again. I also have no idea what to do when I run out of pain meds now that I will no longer be seeing Dr. C. I feel weird hitting Dr. M up for some narcotics after only one 'date'. Maybe Dr. K will help me out if I get desperate enough. Meanwhile, baby doll only used a few of his pain pills from his surgery so he's going to hand over the rest of them to me. I should be set for a while. Maybe even set all the way up until surgery if it happens quick enough.

And mentally, I've had a rough two days. Not sure what the problem is. I think all of this waiting around stuff is grating on my nerves. Let's just do the damn surgery already! So, I've been a bit glum. Upon arriving at work this morning, JT came over to say 'hi' and I simply started crying. He gave me a huge hug and let me get his shirt soggy. I hate spontaneous meltdowns. <sigh> And yes, I really do try to schedule them. I was feeling the need for a good cry last Thursday and told my sweetie that I was going to hang tough until we got home but I was then planning on laying down and having myself a nice big sob-fest. Unfortunately, I was simply so relieved to finally be home, with baby doll tucked in safe and sound, surrounded by my cozy little life, that the need to cry simply evaporated.

Fun stuff:

Because yes, fun stuff DOES still happen even with a cancerous tumor growing in your head!

Scott and I headed back to Waterloo Outlet Mall last Friday. The number one thing on our shopping list was to find him a new pair of sneakers which did not end up happening the week before. Plus, we only made it to half the stores on that first trip. He found a really cool pair on this second trip. I was still unsuccessful in finding a pair of white sandals that I like but I DID find some adorable clothes. This time around I'm the one who made out like a bandit while my sweetheart's credit card did all the heavy lifting. Payback isn't always a bitch. Sometimes it rocks! LOL!

At some point in time this past week we went and saw The Conjuring. It was pretty creepy. We both enjoyed it.

On Saturday we drove out to Charlotte Beach, grabbed some lunch, and walked the pier. It was perfect weather. Not too warm, partially cloudy with a nice breeze. It was a good day to be outside. We ended the afternoon with some frozen custard from Abbott's. Ahhhh........such a good life.

I'm now running around trying to make one last 'date' with as many friends as I can before my surgery. Thursday night I'm having the boys over for a poker game, Friday night is a work happy hour, Sunday is golfing with Sandi, Tuesday I'm heading to Oswego to hang out with T for a couple of hours, and Wednesday I took a half day from work so that Elvisa and I can go on a mad, crazy thrift store shopping spree. I still need to make a plan with Sammy and I'm sure I'm forgetting a few peeps that might want to hear my lovely, muffled speech one last time before I stop being able to talk for an extended period but I'm sure they'll holler if they want some calendar time with me.

And now I'm off to mess around on my iPad for a while, eagerly awaiting the arrival of the light of my life around 9:00. I keep trying to convince myself that the anticipation is enjoyable but I'm just kidding myself. I hate when he works the late shift. 1 hour, 59 minutes and counting..........

Friday, July 26, 2013

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.:-)

Tuesday, July 23, 2013

July 23

Dr. C called last night. He wanted to let me know that the biopsy results came back and as expected, they're positive. He also talked to Dr. A and also as expected, she doesn't think radiation is an option as far as a permanent solution goes. He then started talking to me some more about the surgery. He feels that the feeding tube in my stomach would be permanent but now he's saying that maybe the trach would not be. Maybe I would just need it for a year or two and then the swelling would go down enough for me to talk and breath again through my nose and mouth. This confused me for a number of different reasons. First of all, he had mentioned that the tumor was right next to my voicebox and that it was a concern. Second, he said that movement of my jaw would be affected with the surgery since the tumor is way down deep, embedded and entwined in the muscle. On top of all this, the last time I spoke to him, he didn't sound very optimistic about the surgery getting rid of all the cancer, in general. His opinion seemed to be that the cancer is going to kill me one way or another. It's just a matter of when, and what my quality of life will be when it happens. I finally stopped the conscious stream of thought thing that he had going and I told him that after our last conversation that I had been leaning towards the chemo, shorter, better life option. He said that if I was 20-30 years older that he would fully support that decision but he said it's very distressing for that to be the outcome for a 43 year old woman. Um, okay. (But he really needs to embrace the whole 'it is what it is' mantra.) He then asked me if I was having any difficulty breathing. Um, no? (And now I'm freaking out, am I going to start having difficulty breathing as this thing grows??) And of course, his final query was about my pain management. Did I need any more Vicodin yet? Nope, still trying to get through the truckload I was given last week. I hung up baffled as usual. I think I'm going to type up a bunch of questions and thoughts for him again and e-mail them to him. It seems that if I give him some specific points/questions to focus on, he is able to do a little better in the communication department.

Meanwhile, I'm still scheduled with Dr. Miller on Thursday. I need to tap someone here at work to be my second set of ears at that appointment. I need to choose carefully too now that things are getting so unhappy. Poor Kunkel was stressing about me all weekend after being my person at the biospy. I feel bad that I ruined one of her few non-busy weekends! :-(

In other news, my legs are almost back to normal. Still a little sore but it's easily ignorable. And rather than dissolving, the stitch in my tongue actually fell out the other night.

No new fun stuff to report. I've been spending as much time with my hot, hot man as I can. Last night was supposed to be a night with his daughter but he came over to eat dinner with me and play some cards before going to be with her. While we were playing cards, his wife sent him a text. Her shift at work was canceled so I got to keep him for the entire night. Woo hoo! Bonus night!

Sunday, July 21, 2013

July 21

I don't have much to report but thought I should check in and touch base.....and do some rambling, of course. :-)

I've been creaking around like a granny since Wednesday afternoon. Stairs are especially excruciating. I finally called Dr. B on Friday to find out what they did to me when I was under anesthesia because I was starting to freak out about how bad I felt. Turns out they had to give me a few extra doses of paralytic in order to get my jaw to relax enough for them to get in and get the biopsy. I guess this often leaves patients feeling like they were run over by a Mack truck. Once again, they couldn't have told me this before releasing me?? I was having a heart attack thinking I had accidentally overdosed on acetaminophen and the poisoning of my liver had begun, or the fact that a side effect of Vicodin is that it 'backs' you up and I thought my body was going toxic from that, or that my last tetanus shot was no good and they had given me lockjaw when they punctured my tongue to get the biopsy, or.......imagination can be both a wonderful and horrible thing.  

Anyway, difficulty walking slowed me down for the weekend but I was super relieved to know what was causing it. I ended up canceling on the Comedy Club with Kim and Jamie. They came over to see me instead so that I wouldn't have to leave the house. We played some games, barbequed some chicken, and had a really good visit. Kim brought me some 'cheer up' gifts. I now have a beautiful, leather bound journal that I'm almost scared to write in. I'm going to have to figure out a really good use for it before a pen gets anywhere near it. She also brought me a gift card for Barnes & Noble. I want to buzz out there some time this week and check out their puzzle/game section. The game that the three of us played Friday night was called Name Five. I found it in my game chest, still in it's wrapper! I'm so glad I finally had some peeps to play it with and it has now been officially broken in. And Kim has now given me the means to find an all new game to torture people with. Bwah...ha...ha.

Saturday, baby doll and I had plans to hit Waterloo Outlet Mall and have a retail therapy session. I wasn't sure my legs were up for much but decided to give it a try. A bonus was that I could dope up on Vicodin to cover the muscle pain/spasms, and sleep all the way there and back again while he drove. It was slow going but we managed to hit a few stores. I wasn't really in the mood to buy much for myself. Paying retail when I know I can go to a billion different thrift stores and get good, cheap clothes makes it a bit of a turn-off for me to clothes shop at real stores, even if they are outlet stores. On the other hand, I have no problem buying retail for my incredibly hot man. J. Crew, Ralph Lauren, Tommy Hilfiger, Calvin Klein, Eddie Bauer.......we hit 'em all! It was fun making him play dress up for me and it was cool being able to have him try on some new and different colors that aren't in his usual wardrobe. And let me tell you, he made out like a bandit! I bought him five pairs of shorts, four really nice t-shirts, and four dressy shirts. He's totally styling! And what made it even better is that nobody had ever done that for him before. Taken him on a whirlwind (okay, we were turtle slow due to my legs but you know what I mean) shopping spree and buying an entire wardrobe for him and helping him update his style. He was tickled pink which made me feel on top of the world. :-) Have I mentioned how much I love this guy?

Meanwhile he was feeling left out so I let him buy me a really cute pair of Sketchers and I was in dire need of some new 8 x 8 pans for my baking frenzies. When in doubt, new kitchen stuff always makes me happy.

Today I was supposed to be driving to Oswego to visit my friend T. I already knew yesterday morning when I got up that my legs were likely not going to be up for an hour and a half drive each way to see her plus I'd have to cut way back on the pain killers if I was on the road. So, I had to bow out on her. Temporarily, of course, it will be rescheduled. So, my actual plan for today is to lay in bed for most of the day, dosing up on pain meds and hoping my legs feel well enough for a full day of work tomorrow.

The stitch is still in my tongue, and hurting, it's supposed to dissolve eventually but I have no idea how long that takes. My lip is still blown up, from what I can only assume were the clamps they used. The sores have scabbed over though and are starting to peel so at least I know that boo-boo is healing.  Swallowing is still painful/difficult. Food is definitely getting stuck even more often than it was before.  I've moved back to eating mostly liquids for the past four days. Alas, this means the 3 pounds I had gained have disappeared again. My scale said 115.0 this morning. T actually has some protein packets she's going to send me to see if they'll help bulk me up. I also have two half gallons of ice cream in my fridge. Right after I post this I will be making myself a milkshake.

My second opinion appointment is on Thursday at 12:45. I was seriously pissed when I got the call on Friday. I already have this Thursday off from work because honey bunny is having his final surgery on his hand and I'm supposed to be his 'person'. Un-fucking-believable that I have to miss it. You would think with all the other crap that fate has been throwing at me, it could have given me this one little scheduling thing. But no, I can't be there for my sweetie. His sister is going to take him instead. <sigh> At least he'll be dropped off at my place afterwards so that I can baby him to my heart's content. I will have to make due with that.

Meanwhile, other than the activities listed above, I spent the weekend letting my brain percolate and ponder things, as I like to do. There are a lot of rhetorical questions floating around in my mind. If I choose to go with the shorter, better life, how much shorter are we talking? The first tumor was almost 3cm in a two and a half month period. I can only guess how long this one has been in progress. I had a CT scan back in November that was 'clean'. So, my guess is that it took this one ~ 8 months to reach 3 cm. The doc had told me back when we had the appt to discuss the MRI (before the PET scan) that if it was cancer we were dealing with then it was not raging out of control cancer, but just a smoldering slow burn cancer because it came back in a radiated area. That tends to slow the beast down. And I'm also curious as to how exactly it's going to kill me. Will it spread to my brain or other organs, shut them down, thus snuffing me? Will the tumor grow so big that it will shut off my airway, thus suffocating me? But they wouldn't let me suffocate, would they, they'd put the trach and the stomach tube in anyway until I pass? Or does cancer simply eat away at you until you no longer have the bodily strength to keep yourself alive? Besides all of these lovely contemplations, I was also thinking about practicalities, because hey, as most of you know, I AM OCD/list girl....

I have started papering Rochester with my health care proxy. Baby doll has the authority to pull the plug on me, if he can't do it, my mom is listed to step up to the plate for him. I'm working on my will. Sam has agreed to be the executor and I am also going to make her the beneficiary of my 401k plan. My mom is the beneficiary of my life insurance plan through work. Jamie has agreed to take over my house and my animals for me and my lawyer said the will can definitely stipulate that. Other than a few thousand in savings, I don't think I have any other assets or debts for that matter that make much of a difference. Outside of the will, I am making up a list of personal items that I would like Scott/Jamie/Sam to distribute. Scott gets the chaise, Kunkel gets the hammock, Sandi gets my armoire/jewelry, T gets my books/Kindle, Andy gets my foldout poker table with all the accessories, Justin gets my coin collection, etc. If anyone knows of anything I have that makes them think especially of me, that they would like as a keepsake, speak now and I'll put it on the list that I will be distributing. Meanwhile, Jamie gets the contents of the house besides what is on the list so if you think of something afterwards, you'll have to kick him in the shins for it. ;-)

Thursday, July 18, 2013

July 18 - Part II

Okay, worst.phone.call.ever.

Just talked to Dr. C. The tumor is deep seated in the muscle. He used every instrument on hand in an effort to see it and he can't. It's that far in. But he says that he can feel it and the MRI and the PET scan both show it's there. He said he got as deep as he could to get a biopsy for it. Results will be back in 3-5 days. He said that he would think it's just radiated tissue except the PET scan shows that it's cancer and the fact that I'm in so much pain and am having a hard time even opening my jaw, points to the fact that it's a cancerous tumor.

So, it's located in the worst place possible. He said he can do surgery on it but I will lose my ability to swallow, to talk, to eat, to move my jaw, it will affect my airway, etc. I will need a feeding tube in my stomach for the rest of my life and I will be talking through a trach for the rest of my life. He said my quality of life will be extremely bad. On top of that, he said he can't guarantee that the surgery will be successful. He said it's a REALLY tough surgery. He said I could get a second opinion from Mayo or Sloan Kettering or Roswell - and at the mention of Roswell he went off on a tangent as he is wont to do and said they're having departmental upheavals at Roswell right now and he's never been super impressed with them so he wouldn't actually recommend them for a second opinion. Anyway, back on topic. He doesn't think I need to travel that far for a second opinion. He's going to set me up with an appointment with the robotic arm guy, Matt Miller, to give me a second opinion. I'm assuming that should happen within the next week or so. Although he said he's pretty sure that I am NOT a candidate for the robotic surgery at this point but that doesn't make Dr. Miller any less of a choice for a second opinion on cancerous tumors.

He said that since it's in an area that has already been radiated, neither radiation nor chemo will save me. But based on how badly my life will deteriorate with the surgery, he said that I may want to opt to have chemo to reduce the tumor for a while, extend my life for a limited amount of time, get my affairs in order, say my goodbyes, and that's that.

He said the choice is up to me.

This is so not fun.

William, our 75 year old Russian scientist at work, told me a story today. He said there were two cups of milk. A mouse was dropped into each cup of milk to drown them. The first mouse said oh well, there's nothing I can do, and so he drowned. The second mouse said screw that, and started kicking and swimming for all she's worth, turned the milk into butter,  and escaped. Cute story but unfortunately I don't think I'm going to be making butter.

July 18

Man, you just can't take some people anywhere! Kunkel was my designated 'person' for my biopsy yesterday. She kicked things off by telling me my surgeon's ass looked damn fine in his scrubs. Say what?? She thinks he's a cutie-patootie. I told her that if he announced to her that she had cancer she wouldn't find him nearly attractive. (She agreed with this assessment.) She then stepped things up by whipping out her boob for the nurse in the back room so that she could verify it was poison ivy. (Okay, not her whole boob but I blushed and looked away quickly anyway!) Next thing you know the nurse is on the phone with her hubby asking him what home remedies he uses whenever he gets poison ivy so that she can pass along the tips to Kunkel. I'm telling you, if you ever need to get something done, Kunkel is your woman. She topped things off by flirting with my anesthesiologist post surgery. Turns out they're both 100% Italian, their parents come from the same part of Italy, and they both speak a little Italian. Those two were chatting like long lost friends while I'm laying there sucking on ice chips. Which actually wasn't a bad thing. I find it embarrassing to be the center of attention so it was nice that she was a diversion. Hmmmm......maybe I should start taking her to all my 'things'.........

Biospy went fine, I guess. I woke up so that means success, right? I have a stitch in the tip of my tongue (ow). I guess the clamps weren't enough to keep it out of the way. And I don't know what they did to the right side of my lip but it's all swollen and there's 4 white dots on the underside. Maybe the clamps did that (more ow)? And my throat is VERY sore (big ow!).

I wasn't allowed to eat yesterday, not sure I could have with the pain anyway so my scale is back down an entire pound. Super bummer. I now have an entire bottle of liquid Vicodin. I told them I had just picked up my new prescription on Tuesday, were the cops going to come after me if I picked up another prescription on Wednesday?? Obviously not because I'm happily sucking it down. Right after I took it this morning and things numbed up, I hurried up and drank two Carnation breakfast drinks (Let's start shortening that to CBD's, okay?). There was some pain but it was doable. My next dose of pain meds is at 11:15 so I'll suck down two more CBD's for lunch.

My tongue and lip were hurting as well so I dug through my bin of meds from last year and found the lidocaine gel I had been using. Totally did the trick! I noticed it's almost gone but it had a refill on it from a year ago so I called it in. It wasn't supposed to be ready until 10:30 today but when Kunkel went to Weggie's to pick up the liquid Vicodin for me last night, they already had the bottle of lidocaine ready. So, I'm all set with pain management drugs for some time to come.

Meanwhile, Dr. C cruised past my bed while I was sucking ice chips and he said he had to run upstairs but he would be back down to talk to me about what he found. Then the next thing I know he called down to say that he would just call me today to talk to me. So, here I sit. Waiting for that phone call.

I wasn't actually going to post until after the phone call but I've received a number of individual inquiries about how the biopsy went so I figured I should let everyone know I survived. Heck, I'm even hard at work today (kinda) even though I feel like I ran a 5k yesterday. Which I need to ask Dr. C about. Why do my leg muscles ache so bad? They started aching as soon as I got home yesterday. What in the world did they do to me while I was out??

Tuesday, July 16, 2013

July 16

I sent an entire page of questions to Doc B yesterday. She called me to discuss.

Q: Dr. C said that there’s a likelihood that I would lose the ability to swallow, resulting in a permanent feeding tube in my stomach. Did he just mean food or will I be unable to swallow my own saliva? I’m suddenly picturing myself lurching around constantly drooling.

A: There will definitely be some drooling initially but it will not be permanent. And Dr. C is actually still holding onto the hope that the feeding tube won't be permanent either.

Q: Dr. C said he was going to contact Dr. A to see what she recommends as far as going through radiation again. Any idea if he spoke to her yet or does he need to wait until after the biopsy/mapping?

A: Dr. C is not going to contact Dr. A until after the biopsy/mapping is done tomorrow.

Q: Last summer after my glossectomy, there were milestones to reach before I could be released from the hospital, like getting the staples out of my arm, getting the drain tubes out of my neck, getting the feeding tube out, getting the trach out. You said the trach will likely be in longer this time, does that mean a longer hospital stay or would you actually send me home with the trach still in? Any idea how long this hospital stay might be? Last time I think it was 9 days.
A: People can be sent home with the trach still in, this will not delay release from the hospital. Unclear how long the hospital stay will be until we see what we're dealing with.

Q: Last time I was in ICU the first day or two, will that be what happens this time as well?

A: Yes, the first couple of days will be spent in the ICU.

Q: Can you tell at all from the MRI or the PET scan the size of the ‘active’ area or do you really have no idea until after the biopsy? Are we talking the size of a pea, a quarter, an orange?

A: The tumor looks to be about 3 cm or the size of a half dollar.

Q: Last time I was out of work for 6 weeks. Mostly, I think, due to the arm graft. Since there is no plastic surgery involved this time around do you think my length of time out of work will be shorter or are there other considerations I don’t know about that might make it longer? 

A: We're sorry this wasn't made clear to you. There IS plastic surgery involved. Dr. Vega will once again be in on this. Anytime a 'flap' is put into place, a plastic surgeon is involved. Even though there will not be a skin graft to cover up where they take the flesh from your thigh, a piece of plastic will be inserted in place of the flesh that is taken. And you should count on taking 6-8 weeks off from work again, especially since you are run down (yes I took offense to that statement when she said it!) from your prior battle with cancer.

Note: And on a side note, I’m having some difficulty swallowing. I noticed it some time between the MRI and the PET scan and it’s a little worse each day. I’m assuming it’s something that will be noted during the biopsy on Wednesday but I wanted to bring attention to it now.

A: Yes, you have a 3 cm tumor in your throat. This would account for difficulty swallowing, it's not in your head.

Monday, July 15, 2013

July 15

Okay, I took the weekend to 'get right' with things. I'm feeling okay. Not as optimistic as last summer but hey, I think there's good reason for that. Since the cancer returned in an area that has already gone through radiation, I think I'm pretty much SOL. So, I'll get through whatever I need to get through and do the best that I can with however things end up.

I spoke to Jamie about taking over my house and furballs if I kick it. He's in. He's not happy that I need to make such a request, but he's in. So, I have an appointment with a lawyer tonight to start getting a will in place and to see what can legally be drawn up to make the house thing happen. There's probably other stuff that I need to do or at least think about. Hopefully the lawyer will be able to give me some guidance.

Had a serious talk with my babydoll on Friday night. Told him that I wouldn't blame him if he wanted to bow out. We've only been dating 6 months. Asking him to deal with someone recovering from cancer is a lot different than asking him to deal with someone with active cancer. He told me in no uncertain terms that he's in 100%. I love that man to pieces.

Dr. B asked me last Thursday if I needed a refill on the Vicodin. I told her I had just gotten it filled and thought I was all set. She seemed reluctant to believe me. Today I decided it probably wasn't a bad idea to get it refilled this week in preparation for the biopsy on Wednesday. I imagine having them cut a chunk of the base of my tongue/throat is going to hurt. I talked to Rachel the nurse this morning about picking up a script while I am there on Wednesday. She seemed to think I was really going to want it sooner than that so I picked it up today to keep her happy. I'm suddenly getting the feeling that the docs/nurses want me WELL supplied with pain meds. It's kind of worrying me!

Today I filled out an on-line medical history. Tomorrow I have to call the surgery center after 11:00 to find out when my procedure is scheduled for. I took all of Wednesday off from work. The post-op appointment is currently set up for 7/31 although front desk Becky said she may try to pull that in. She just wanted to get something on the calendar now because Dr. C books up so fast.

I also sent an entire Word document to Cathy, my inside contact at Dr. C's office, with a TON of questions for Dr. B/Dr. C to start thinking about. For example: Dr. C said that there's a strong likelihood of me losing the ability to swallow, hence the feeding tube, but I started wondering last night, what about my saliva? I'm assuming I'll still be doing some swallowing, right? Can you imagine me lurching around, drooling constantly?? UGH. These are the types of thoughts that were rattling around in my brain all weekend.

Fun stuff:

Tonight I'm having dinner with my honey bunny at the Crab Shack before my lawyer appointment. Friday it's off to the Comedy Club with Jamie and our mutual friend Kim who is in town this month. Saturday, Scott had mentioned doing a little retail therapy at Waterloo Outlet although the weather is looking pretty sweet, I might see if I can convince him that a round of golf would be more fun.

And this morning I received a request from Scott's niece for some sweet treats. My chocolate chip cookies and 7 layer bars seemed to have been a big hit at her graduation party! Instead of the way to my heart being through my stomach.....if you really want to get on my good side, ask me to cook/bake for you. She made my week! Hopefully she and her hubby are available on Thursday night so that Scott and I can kick their ass at some cards. The beating, of course, won't bother them because they'll be all doped up on a sugar high from the goodies I will bring. :-)

Friday, July 12, 2013

July 12 - Part II

Yeesh. After being such a slacker for a while on this thing, I'm suddenly full of crap to write about and peeps are getting multiple posts a day! Aren't you guys lucky? :-)

Had my pre-op this afternoon, and want to puke up as much info as I can before it all falls out the other side of my head. So yeah, biopsy next Wednesday and then we get to start scheduling the surgery. While he has me under the anesthesia he'll be able to feel around and map out exactly how big this thing is which will then dictate how we proceed in the surgery department. This time the flesh for the flap will be taken from my outer thigh. It will be in the shape of a canoe and it looked like the incision is going to be 5-6 inches long. He said they then just sew the edges back up, no skin grafts from other areas of my body needed this time.

Dr. B (female counterpart of Dr. C) said that this flap is going to be bigger and thicker and deeper than the last one so it's going to take longer for the swelling to go down. This means the trach is going to be in longer. I told her there had better be a huge supply of Ativan on hand if that's the case because I really hate the trach. Not sure how this affects the length of the hospital stay. Will they keep me in the hospital for as long as the trach is in or will they send me home with it? I should probably start a new list of questions for round 2 of this lovely adventure.

Meanwhile, I asked Dr. C about eating and talking with even more of my tongue replaced with 'dead' flesh. He said there's a strong likelihood that I will be eating through a feeding tube implanted in my stomach for the rest of my life. He said when that much of your tongue is removed, you lose the ability to swallow. Okay, whatever. I'm still not really tasting food as it is so after a year of not enjoying eating, I guess I can't cry over that too much. Although I wonder how gross a feeding tube is and what myriad of problems it will bring. ie: Will it be a magnet for infections? Does it get clogged? Is it something I'm going to have to clean every day? Does it hurt?? Oooh....and on the bright side, can I simply dump a couple of shots of tequila in it and get instantly drunk?? Man, I could have some fun with this!

He said speech is usually okay. He said worst case, I could be talking through a trach the rest of my life but he said that speech normally comes back, no problem. So I'm going to try not to worry about that one.

Dr. C said that some people wonder why we can't just radiate the new growth instead of surgically removing it. He said that since the area has already gone through radiation and the new growth happened anyway, surgical removal is necessary. What he didn't seem sure about is whether there is any point in putting me through follow up radiation again after the surgery. He's going to call Dr. A and see what her opinion is about that.

He started talking about splitting my face again. I asked him if that meant the robotic arm guy was off the table. He said no, not necessarily. It's still an option. I kind of get the feeling that he's a little excited about performing this surgery. I told Kunkel that if after the biopsy, Dr. C tells me that he can do a better job at restoring functionality by splitting my face than the robotic arm guy can, then I'm going to go ahead and let him split my face. I'd much rather be able to eat and talk than worry about looking like a monster.

I've had to pause in this blog 3-4 times now to run over to Kunkel's desk and verify if she remembers some of these salient details. She's having a hard time too. They just throw so much info at you! We've decided that from here on out we're going to whip out our iPhones and start recording these appointments so that we can re-listen as necessary. And if the docs don't like that then we're going to start dragging 12 people to these appointments so that we have a ton of ears listening to the info that's given.

Okay, that's all of the appointment that I can remember for now. If anything else comes bubbling to the surface, I'll post about it tomorrow. On top of contacting a lawyer, and getting some life details straightened around, I really need to research a career that will allow me to stay home if my body becomes any messier. Like writing sci-fi/horror novels. I've always wanted to do that.

July 12

Doctor's office called this morning. I'm heading in for a pre-op appointment this afternoon at 2:30. Biopsy is scheduled for next Wednesday. Dr. C really doesn't let any grass grow under his feet!

I have to go talk to HR. I was already out on disability for 6 weeks last summer. I think they only allow you 12 weeks a year before your job is no longer protected.

I already sent a note to my boss letting him know that he might want to start thinking about job coverage for me, ASAP.

I also need to set up an appointment with a lawyer and get a will in place. Not that I have anything of value but I have some specific nostalgia items that I would like to go to specific people. Not sure if a will would take care of something like that but I need to find out. I'd also like to leave my house to my buddy Jamie with the stipulation that he lives there and takes care of my furballs until they die. I should probably discuss that with him. Ugh! Life details!

Meanwhile, note to Sammy: Most excellent advice in regards to trying to gain as much weight as possible before the next surgery. (Stupid scale said 115 this morning!) I stopped at DD this morning and am sucking down a 460 calorie iced coffee. I also have a box of the Carnation breakfast stuff on my desk, I'm going to try to start downing 3 of those a day as well. I sticky noted a schedule on the front of the box to specify what time I should be ingesting one. I also plan to stop at Weggie's tonight to switch back to whole milk instead of the 2% crap that's currently in my fridge. And thanks for giving me permission to get addicted to pain pills. You're the best. ;-)

Thursday, July 11, 2013

July 11 - Part III

Decided to transcribe the message from Dr. C. Here's exactly what was said:

"Ms. Quinn, Dr. C, just wanted to get back to you on the PET scan you had done today. There is some activity at your base of tongue area. The same area we looked at when you were in the office recently. Given that the PET scan showed increased activity, I would proceed to do a biopsy of this area. I'm letting you know in a message which I don't like to do, I like to discuss in person but we need to schedule the biopsy. We'll get it scheduled as quick as we can, within the next week or so, so that we can get the area mapped out. But is looks.......they're calling it suspicious or recurrent disease at the tongue base area behind where we operated. Give us a call tomorrow and we'll begin the process of getting things biopsied for you."

July 11 - Part II

So, I hit post on that last blog, walk out into the kitchen, and see I have a message on my answering machine. Must have gotten a call while I was sleeping. It's Dr. C. Guess Kunkel was right, the results ARE instantaneous. The PET scan is showing that there is recurrent activity behind where they performed the surgery last year.  I have to go in for a biopsy next week. It's baaaack............

July 11

I really don't have much to report but peeps are wondering so........

The PET scan went fine for the most part. I got there, they took me to a back room where I downed the anti-anxiety pill. My tech, Rob, then took a blood sample to make sure I had done the no-carb thing. My sugar said 74 which he was very pleased with. I asked him if 100 is the number you need to be under and he said hardly anyone EVER gets their sugar under 100 so the number is more like 125-150. Yes, I'm an over achiever, what can I say. :-)

Then Rob tried to put an IV in. Throughout this whole process over the past year I have learned that I have really tiny veins and I'm very hard to 'stick'. I also learned that I don't like to watch. I don't mind blood but watching them stick a needle in me, and then moving it around under the skin (which bleeping hurts!) because the vein moved on them and they're trying to find it again, really grosses me out and I get a little woozy. So, I don't watch. So while I'm not watching today, there are sounds coming from tech Rob that are sounding a little more frantic than they should. I turn around to see what's going on and there's blood everywhere! WTH?! I looked at him and asked "What happened??". Turns out he accidentally hit an artery rather than a vein. Ewwww. After he got the bleeding to stop, washed off my entire arm, changed the covers on the pillow, and basically did a major cleanup, we were good to go again. Unfortunately, since he 'ruined' the area in the crook of my elbow, I once again had to get the line put in the back of my hand. Those hurt quite a bit more that the other but at least we finally got it done. Then they shot me up with the radioactive sugar and inserted a saline drip to disperse it through my body, and I got to sit quietly for 45 minutes. I think I read for 10 minutes and then just decided to nap because last night was not a good sleeping night. Too many bad dreams about cancer creeping through my body and eating me alive. Or the other worry is slowly wasting away until I don't weigh enough to keep myself alive. My scale said 116 this morning. That's the lowest I've been yet, I think.

Anyway, I then get stuck in the machine for picture taking time. I was in the machine for ~45 minutes. I took a nap in there too. :-)

And then I was done. My coworker, Rich, came to pick me up. I took him to lunch at the Crab Shack as a thank you for picking up my sad, sorry butt, and because I hadn't eaten anything since 6:30 the night before and I thought food would make me feel better. Turns out I was wrong. I got nauseous. Rich dropped me off at home instead of back at work and he and JT dropped my car off in my driveway later on in the afternoon for me. I've been sleeping ever since.

Not sure when I'll hear from Dr. C about the PET scan results. Kunkel said she thought he had said the results were pretty instantaneous. I don't remember him saying that but hey, that's why I bring an extra set of ears with me. Either way, I have a checkup appointment set up with him for next Thursday that I haven't gotten around to canceling yet so I'm just going to leave it on the books until I hear from his office. So, hopefully within a week I will know if I have to go through another round of hell or not. Stay tuned.

Wednesday, July 10, 2013

July 10th

My mistake, I don't fast for 24 hours before the PET scan, I have to do a no-carb diet. My PET scan is at 9:00 am tomorrow so my no-carb thing started at 9:00 this morning. Along with no caffeine, no alcohol, no carbonated beverages, no exercise, and a list of other weird things I'm not allowed.

So,  I was supposed to do lunch with my 'lunch club' today but due to the no carb thing, I cancelled it and went home for lunch so that I could eat a cheese omelet. But I wasn't thinking and I drank a huge glass of milk with my omelet!! I'm not allowed dairy either according to the PET scan place and there was 26 grams of carbs in that glass. UGH! Hopefully since my 24 hours didn't start until 9:00 this morning, and I only cheated 3 hours into the timeframe, maybe I can drink enough water to purge those carbs and offset any damage I did. They take your blood when you arrive for the PET scan and if your sugar numbers aren't under 100 or something they fine you $300 and you have to reschedule. Yeesh.

I'm all set with Leo taking me to the appointment and then Rich picking me up and bringing me back to work. I can't remember if I went back to work after the last one or not. They tell you not to take the anxiety medicine until you're at the appointment because they don't want it wearing off too fast. This leads me to believe that I should be fine working tomorrow afternoon. Which is a good thing because we've sold (3) machines in the past week! We haven't sold any machines in months and then suddenly, during what is normally the slowest month of the year, things have gone crazy. This of course is a good thing, job security and all.

I was telling a coworker earlier this week that it looks like the cancer might be back. I then realized that I was being kind of negative so I went to talk to Kunkel. I asked her if she walked out of the appointment with Dr. C feeling optimistic or pessimistic. She said it was funny that I asked because she had been wondering the same thing! She said it was a roller coaster of an appointment and she wasn't sure what to think by the end of it. I'm guessing doctors need to be obscure like that until actual test results show up.

I keep swinging both ways as well. On Sunday I swear my ear was aching a lot less than it has been. Then I started second guessing myself. Maybe I'm just wishing that the night guard is having an effect because I would prefer that my ear is aching due to TMJ rather than a second round of cancer. Now today I feel like I'm having difficulty swallowing. Like there's some kind of obstruction way down deep in the back of my throat. I have to think this is purely psychosomatic though. Or I at least hope it is.

And I had another wishy washy thought yesterday. My thrush hasn't been bothering me. But is it because I finally kicked that nasty stuff or is it because I've been downing 4-6 Advil at a time and now I've switched to Vicoden so maybe I'm just not feeling the thrush any more??

I sent my friend Sandi a picture of me wearing the incredibly cute $4 dress that I found at the thrift store last week. She responded that she loves my hair flat ironed. I laughed. I haven't flat ironed it in a while now. I think it's gone naturally straight. Somebody told me that radiation can permanently change what your hair normally does. Thanks goodness I look okay in straight hair!

- Thrush comes and goes.
- Spit production still around 50%.
- Bullfrog effect still happening.
- Garbled talking. Swollen throat.
- Partial taste buds - Sweet is around 15% right now.

Fun stuff:

Scott and I had a good time with Kit and Fran. They're a funny couple! And the cocktail party at the Jazz Fest was as awesome as usual. They had a bathtub of giant shrimp and super yummy hand passed snackie foods like crabcakes and bruschetta. After the cocktail party it started to rain so we ended up at a local bar shooting darts and pool. Scott kicked my ass at darts, I beat him on the pool table. We had a blast! And the 'scotch' at Woodcliff was canceled due to lack of interest. Huge bummer. We ended up going to a brand spanking new restaurant with some of Scott's friends. I had the duck. It was fabulous!

Not much of anything happened this past week on the fun side. I managed to clean my garage over the holiday weekend. Just in time too because yesterday I received an e-mail from one of the poker guys. One of our comrades, Baby B, moved to Florida a handful of years ago but will be in town this month for a couple of weeks. We don't normally play poker during the summer because everyone is too busy with their families and the nice weather but for Baby B. we'll pull together a game!

Last Friday, Scott's boss, Paul, invited me in to the office to eat lunch with the guys, he was buying. So, I baked a bunch of cookies and schmoozed with honey-bunny's coworkers/boss while they worked/ate. I mostly got to talk to Paul since he's a manager (read that as paper pusher) and so he was able to simply sit, eat, and carry on a conversation rather than having to stay glued to a monitor, dispatching drivers.  It turns out that Paul's wife recently found a lump in her breast. They have an appointment with a doctor tomorrow to get it checked out. I had Scott pass along my e-mail address and phone number to Paul in case his wife wants someone to talk to who is somewhat in the same boat.

This past Sunday I put on a super cute dress, got dolled up, and took myself out for a fancy dinner. Why? I don't know. Just because I can, I guess. :-) I sat out on the patio, had some shrimp bisque and some roast duck (again), and enjoyed myself.

Last night my friend Jamie and I met Scott and his daughter, Jessica, and her friend, Sara, at the beach and we watched a free showing of Jaws while sitting outside next to the lake. It was really cool! Unfortunately they can't start the movie until it gets dark which is around 9:00 which means halfway through I fell asleep in my chair. I'm so old. I was thinking about hitting the drive-in this Saturday because the double feature is Despicable Me 2 and Monsters University, both of which I really want to see! But if I can't make it through one movie that started at 9:00, I have no idea how I expect myself to make it through two.

That's it for now. I'll post an update when I hear what the PET scan has to say.

Wednesday, July 3, 2013

July 3rd

Well, July just doesn't seem to be my month in general. Doctor C showed me the MRI pics. There's a suspicious 'spot' way down deep on the back of my tongue. Not a surface spot (or tumor) like I had on my tongue but a deep tissue spot. He scoped me and did some probing with fingers and mirrors. He said he can feel an abnormality down in there but can't really tell much from the feel of it. He said only ~5% of patients have cancer reoccur in an area that has been radiated. Which is why radiation docs usually refer to themselves as the "one and done" docs. Plus he says radiation changes the terrain of the area that has been radiated anyway so it's hard for surgeons to be able to tell if something wonky is going on in those areas or not. So, step one is to get a PET scan. This is the scan where I have to fast the night before, then they shoot me up with sugar, and then I get stuck in a body sized mail tube to get scanned. Cancer loves sugar so if there's cancer present, the sugar will all conglomerate around it and light it up like a Christmas tree. This was also the scan where I had to take the anxiety medicine beforehand and had to have someone drive me. I'm going to have to tap someone to be my chauffeur when this thing gets scheduled. And it will take a week or two to get it scheduled because all PET scans have to be approved by the insurance company first. And then according to Dr. C, 100% of them get denied. And then he has to get on the phone and tell the nice insurance people exactly why he is recommending the scan at which point they usually approve it. He said it's a bunch of bullshit hoops that docs have to jump through. He also wrote me out a prescription for Vicodin to help manage the pain. He said THAT whole process will be getting a lot more complicated come August as well. There's going to be some website that he has to log into whenever he wants to prescribe a narcotic to make sure I haven't been doctor hopping and getting pain meds from numerous different docs. Sheesh!

Anyway, if the PET scan shows that it COULD very well be cancer then he will make an appointment for me to come in so he can biopsy the area. It's done right in his office but he will put me to sleep for it and it takes about 30 minutes.

If it IS cancer, it's in a really hard to reach area. He said that if he performed the surgery, he'd have to split my jaw in half and swing the lower half of my face out to get to it. He says there's a guy in town though that does surgeries like this with a robotic arm so that splitting the jaw isn't necessary. He thinks I would be a good candidate for that.

But we get ahead of ourselves. PET scan first. I took Kunkel to this appointment. She said Dr. C was nothing like what she was picturing from the comments I made about him. She said he actually seemed fairly personable. I'm not sure if it was her influence or if he had a good day but he actually was pretty personable. Still rambled off on a lot of tangents, brutally described different paths that might need to be taken, and didn't give any concrete answers to any questions asked...........but he was somewhat personable despite all that. :-)

Tuesday, July 2, 2013

July 2nd

Fuck. Results from the MRI are in sooner than expected and I walked in to work this morning to a voicemail from Dr. C's office. He wants to see me at 3:30 tomorrow. Chickie on the phone said he's specifically leaving the hospital on a surgery day to come talk to me. That can't be good. I'm sitting here crying at my desk. I am now going to be freaking out until tomorrow afternoon. Funny, today marks the one year anniversary of my surgery..........

Monday, July 1, 2013

July 1st

July 1st - So, I don't think I've had an MRI before. I've had a PET scan where they make you fast and then flood your body with sugar before putting you into a huge machine that scans your entire body. And I've had two CT scans where they put in an IV and after some non-contrast pictures, they put dye in you for the contrast pictures. That's the dye where you feel like you're wetting yourself. On Friday, I was put into an all new and different machine and the dye was injected directly into a vein halfway through the procedure (and I'm happy to report it did NOT make me feel like I was wetting myself!). And let me tell you, it was quite a procedure. Ear plugs, ear cushions, a football helmet type mask, and I was in the machine for almost an hour! Yeesh! Results should be in next week.

Meanwhile, I've used the heating pad a few times now. Not sure if it's helping but it feels really good while I'm using it. Unfortunately I worry that I'm going to fall asleep with it on and while it has an automatic shut off, what if it malfunctions? My mom befriended a little old lady named Mary when I had my car accident, way back when. Mary's lower leg was a bit deformed because the nurses had put a heating pad on her leg and then got busy. It ended up melting part of her leg. Ewwww. Honey bunny only wants me to use the heating pad on nights when he's there so that he can wake me up after 20 minutes of using it. I think that's a really good idea.

Tomorrow is my dentist appointment to get my mouth guards to wear at night. I'm actually looking forward to it because at this point, I'm willing to try anything to stop this continuous ache in my ear. It's been 7 weeks now of constant dull pain. I've become quite a miserable, little human being. I want my happy self back.

I have my next regular check up with Dr. C on July 18th so hopefully I will be able to report in that the ear thing is better by that point in time. We'll see.................