August 16

Yeah, that sucked.

Can't I just leave it at that?

Do you really want to hear my grumblings??

Fine.

I was told to report to the hospital at 11:30 and my procedure was at 1:00. Why I continue to hope for the best, I have no idea. I'm kind of stupid like that. Toby picked me up, we buzzed over, and they walked me into the back to get prepped immediately, I didn't even have a chance to sit down in the waiting room. I thought that was a good sign. Once I was in my lovely hospital gown with an IV drip going, they brought Toby back and we gabbed, and looked at wedding pictures, and basically killed time. At 1:40 I asked him if he could go check at the desk and make sure they hadn't forgotten about me. They told him they were supposedly sending someone down to get me right then. I told Toby he could go ahead and take off, he said he'd be back at 4:30. Five minutes after he left, they actually did come get me.

I was then rolled to a drafty and very empty hallway where they parked me and once again seemed to forget about me. The dose of Vicodin that I had taken at 10:15 that morning started wearing off around 3:00 and by 3:30 I was lying there quietly crying because the whole side of my face ached and throbbed. A couple of different nurses popped out to see me here and there and kept telling me they would see about some pain meds, or find out when I was really going to be taken into surgery. Then they would disappear, never to be seen again. I'm pretty sure there's an unmapped black hole behind the door they kept going through and they were all swept into a vortex. I should probably report it to someone, I'm sure their families are worried.

I'm not even sure what time they finally rolled me in for the procedure. I'm guessing it was around 4:00 - 4:30. They had told me that they don't put you all the way under for this procedure and they weren't kidding. I was strapped onto a table and some big 3 monitor assembly was rolled up right in front of my face. I'm assuming so the doc could see what he was doing, not for the benefit of entertaining me with video of my insides. Meanwhile, I was literally screaming in pain as they jabbed some cable up my nose and down my throat. And I do indeed remember bits and pieces of the whole surgery with me thrashing and yelling the whole time. It was not pretty.

Back in my room, all I can say is 'ow'. It wasn't even the penetration site of the feeding tube that was hurting. It was the massive stomach contractions that continued to make me cry. Morphine didn't even touch this pain so they tried something called Dilaudid which helped for all of an hour so they upped the dosage. I was finally out of pain for two hour increments at a time. The nurse, Kelly, who was an absolute sweetheart, called the doctor and found out that whatever mix of meds they gave me during the procedure are known to sometimes cause the 'cramping' that I was experiencing. It was hell.

Meanwhile, Toby came back to visit me for a bit. Since I won't be eating from here on out I gave him a Groupon that I had for a beer/appetizer pairing. He and his wife took advantage of the Groupon that very night. It sounds like it was a fun time!

Baby doll finally got over to see me around 8:30. I asked Kelly what the visiting hours were. She said they end at 8:00 but that she didn't mind if someone wanted to come in later than that. Thank goodness because the love of my life stayed until after midnight. I kept falling asleep and I would wake up and he would just be sitting there, patiently holding my hand. God I love that man.

So, the night was spent sleeping in 2 hour increments and then getting up and shuffling me and my IV pole to the bathroom and then getting back to my room where Kelly would administer more Dilaudid. She was truly awesome. As soon as she would hear me raising the head of my bed she would enter the request for the next dose of meds so they would be ready for me by the time I got back to my "room". She and I had quite a seamless system going.

They finally sprung me around 11:00 the next morning and Toby saw me safely back home by 11:30. Upon arriving home I discovered (7) new messages on my answering machine. The Visiting Nurse (VN) place had called (5) times, looking to come to my house to teach me how to use my shiny, new G tube. You would think that after not getting an answer, they would wait for me to call back but the chick actually showed up at 10:00 and left me a final message while sitting in my driveway. I have no idea why they thought this training would happen in the morning but whatever. The other (2) messages were from the place that wanted to drop off my feeding supplies. At least that was just one call from the driver and one call from the dispatch center. I called them back and they had the supplies delivered to me within the hour. I finally have a use for my empty spare bedroom other than hosting poker games. It's now my medical equipment warehouse. They dropped off ~7 cases of Jevity, a slew of syringes, gravity feed bags, an IV pole, tape, and sterile gauze. They said it's a one month supply based on the doctors currently wanting me to 'eat' 6 cans a day. They told me my insurance covers 90% of the costs so my co-pay for this one month supply was $40. Now there's a grocery bill I can get behind! ;-)

I was finally able to get a hold of the VN place and a nurse came out to see me around 4:15. She was nice enough but as usual, not quite on the ball. She went over a bunch of medical stuff with me, showed me how to give myself the feedings, etc. During the course of all this she asked me if I had ever had a feeding tube before and I said no. Then when she was showing me how to do clean up on everything, I was struck by some major cramping (Nurse Jo Ann was right! But I'll get to that in a minute.) and she asked me if I normally experience cramping or diarrhea after a tube feeding. I just looked at her through my haze of pain and the word bubble over my head said WTF?!? but my mouth said "This is my first feeding ever so I really can't answer that.". At which point she was like oh, that's right. <sigh> Anyway, I forgot that Nurse Jo Ann had told me to 'eat' slowly the first few times to avoid cramping. The nurse and I just put the tube on full throttle which ended up being a very bad idea although on the bright side the feeding only took 20 minutes. Later in the evening I sat down and 'ate' dinner with baby doll. I made sure to slow down the drip this time. The feeding took 50 minutes but I had absolutely no cramping afterwards so it was well worth slowing it down.

It was good to be back in my own bed last night although it was a slightly uncomfortable night of rest. At least it wasn't due to cramping, just general soreness in my abdomen. It was a little tricky trying to cuddle up to my sweetie with this thing poking out of me as well. Today I realized that the tape they sent over is likely to tape it down to my body so that it's NOT poking out. So, that's what I did when I dressed for work this morning. If I wasn't hunched over, shuffling around, while tenderly holding my stomach, you might not know that anything was amiss! I took my IV rig into work this morning too and gave myself a feeding at my desk with a couple of coworkers looking on. Easy peasy!

 And here's a picture of the low profile PEG that Nurse Jo Ann showed me:

Today was just a half day because a) I would have had to leave at 2:30 for my doctor's appointment anyway and b) I forgot to put Vicodin in my purse so I was a hurting unit by the time noon came around.

My lawyer Ted (Scott's big brother) stopped by the office this morning and I signed my will and had it witnessed. I'm glad I finally got that in place. JBB can picture me gleefully putting a big, fat check mark next to that action item. ;-)

Scott's Corvette was delivered on Wednesday so I got to take a ride in it last night. It truly is a beautiful piece of machinery. I think it's going to be a source of joy for him for many years to come.

My coworker Chris who works remotely from one of the Carolinas I think, was in town this week. He stopped over to let me know that he just discovered my blog and we talked about my big adventure. His wife is an occupational therapist. I guess he shared some of the blog with her and she didn't like Dr. C's attitude about my quality of life either. She works with patients all the time who have gone through the same types of surgeries I've been through and she's seen amazing results. He also sent me an e-mail this morning with some GREAT info on ASL as well as a local contact. I didn't realize that MCC actually teaches basic ASL so I plan on looking into that.

The VN also mentioned that I should call my phone company and ask them about a program they might offer where if I answer the phone, I can type my response to the caller and the operator will read my response to them. That would certainly come in handy. I was wondering how I was going to order my feeding supplies each month. You would think there was an electronic/internet option for everything these days but I have found that's not always the case.

And I've been slacking on pictures lately because there's been a lot of stuff to talk about but I'm going to add some here.

Scott and I having some Segway fun:

I got a great shot of the Asquino-Briggs clan on the log flume ride at Sea Breeze:

 Did I mention that baby doll turns 51 this coming Wednesday? I bought him an IPad for his birthday. Yeah, he might be a little spoiled. ;-)

I also received an e-mail from Applebee's recently. They were promoting something called the "Desk Decoy". It's a blow-up doll that you're supposed to leave at your desk so that you can go out for lunch at Applebee's. Whatever. I bought one for both JT and for baby doll. They've both been having a blast with them at the office:

And with that, I'm out of here. Wonder if I can sneak in a quick nap before my sweetie comes to pick me up in his Corvette to take me to my doctor's appointment in style............

August 13

A few more things surfaced in my memory from yesterday:

It turns out that the fact that my left vocal cord isn't working has a lot more impact on me than just effecting my speech. Dr. V said that your vocal cords actually move together and move apart based on talking, swallowing, etc. They move together to protect things from accidentally going down your airway passage. So the fact that the left one isn't moving is leaving my airway susceptible to aspirating things more easily. He said this is something they can try to correct later down the road if need be. They can actually move the non-working chord over a little bit so that the working chord has a better chance of making contact when it tries to 'close'.

And I  mentioned that the incision length in my leg seems to have doubled. It occurred to me that the first time I was shown the length, the doctor was probably just showing me the length of the flesh that was being removed. Dr. V was showing me not only the length of flesh, but how far up the scar will go from taking out all the associated veins as well. I remembered the same thing happened with my arm graft. I thought there would just be a circle on my wrist because they forgot to mention the ~6 inch incision above the circle from the vein removal.

I got a little more insight into the trach thing. If they do NOT need to remove my voice box and they feel I will eventually be breathing on my own, then they will put in a trach, which I guess is a temporary apparatus that allows me to breath through my neck. If they DO have to remove my voice box, which means I will be breathing through my neck for the rest of my life, then they will simply insert a tube into a permanent hole in my throat that does not have a device attached to it. It's just a hole. That was something that wasn't really clear to me before. For some reason I was picturing the trach apparatus as being permanent. Meanwhile, gifts of scarves will be most appreciated if the second scenario happens. ;-P

I think Nurse Jo Ann and I are starting to get the measure of each other. She started to give me a hard time yesterday, I saw her open her mouth, I saw what response was about to come out, and I gave her "the look". She paused, then closed her mouth and moved on. I'm glad to see she's trainable. And just as a point of interest, she kept making comments that I should leave my overnight bag in the car and have someone bring it up after surgery, and she was talking about the doctor giving an update to whoever was in the waiting room when surgery was over, and blah, blah, blah. I finally told her that there would be nobody waiting and that I specifically wanted the doctor(s) to call Justin and give him an update once everything is over and done with so that he can then make a couple of phone calls to the peeps who feel they need immediate updates and then he can update the blog. I could tell that she was going to insist that I must have somebody that I could have waiting to see me afterwards, which is when she got 'the look'. Some people just don't understand that privacy is a valid option. The last thing I want or need is having someone hovering over me when I wake up. Unless it's a nurse asking me if I want some Ativan!!

My sweetheart of a buddy/coworker, Toby, has volunteered to take me to the hospital tomorrow, and he wants to pick me up on Thursday as well. I don't think I mentioned it but he sent me a huge, gorgeous bouquet of flowers a couple of weeks ago along with a 'giant' hug and he's been offering up his dad's services as a dentist and sending me links to cancer centers across the USA. He was also texting me at strange hours from China just to check up on me to see how I'm doing. Talk about feeling loved! :-)


Fun stuff:

The Segway thing on Saturday was fun! We got to bomb around in the woods, going up and down hills, and barreling around corners. Too cool. Afterwards we stopped at Barnes and Nobles so that I could use the gift card Kim got me and baby doll wanted to buy me a present as well. I walked away with quite the haul! I got a pair of warm, fuzzy pink booties to keep my tootsies warm in the hospital, I got a clip on book light in case I actually have a roomie in the hospital this year. Kind of weird that I didn't have one last year but I was okay with that. I forget how much extra it is to have a private room but if it's not too crazy, expensive, I might buck up the money for it this year because that was really nice last year being able to watch TV at 3:00 am when I had insomnia.  Anyway, I also got a novel called Girlfriend in a Coma, it looked interesting. And I bought a big book of Jumble puzzles. Not the most taxing puzzle for the brain but a lot of fun to do!

I have a major dilemma going on right now. I don't know if I should take my iPad into the hospital with me or not. It would be awesome to have it! I could blog, send e-mails, and play games. But it's a $500+ pice of technology and I would be so scared to have it stolen. What to do, what to do.

Sunday I was pretty darned productive. Ran a ton of errands and got a lot of prep work done for my upcoming hospital stay. I also got in a good nap or two, or course. Plus I watched a couple of movies. I saw The Switch (very cute), I watched The Truman Show (an oldie but goodie), and I watched The Secret Garden (I've read the book, they actually did a good job with the movie!).

Yesterday after my 3 hour appointment of fun, I met Sam, Mark and the kids at Seabreeze. Had a blast going on some of the rides with them and basically just absorbing the essence of adorable kids. It was good to get to hug them one last time before what's likely to be a long period of absence.

Today I had lunch with my friend ElRay. It was awesome catching up with her, we haven't talked in years other than an occasional FB post.   She's my crazy friend who decided to have a baby at age 50! Yes, I know, she's seriously certifiable but she is happier than I have EVER seen her. Of course, this is the woman who's run the Boston marathon and has many other noteworthy accomplishments under her belt so it didn't surprise me too much that she would tackle the role of motherhood head on this late in the game. Maybe some of her daring and drive rubbed off on me at lunch today and will help me kick this cancer shit to the curb!

That's about all the fun that's planned between now and the big day. I'll be spending all of my spare time running around doing prep. So far I've trimmed all of the furballs nails, and gave them all flea drops. I weeded my flowerbeds. I assembled  another storage cabinet in the basement and got all of my house supplies organized. I ordered some prezzies for Justin as a thank you for all the surgery related stuff that he's going to be doing for me (man, he's the best!). I still need to find a snow plowing service for this winter because I don't think I want to handle any shoveling that may be needed. And I noticed yesterday that Wegman's has Halloween candy out already. I was really tempted to load up. As you can tell, I'm trying to think of things that I should get done now that I might not feel up to doing for the next three months. Of course, I have a ton of freakin' awesome people lined up who are eager and able to do whatever I need, be it mowing the lawn, grocery shopping, taking the furballs to the vet, or whatever. And baby doll seems to really want to be my main go-to which is okay in my book since he's definitely the #1 person in my life. I really appreciate that I have so many truly fantastic human beings in my life. It feels good to know that I'm so well loved. :-)

August 12

Poor H. I finally drag him to an appointment and it's a 3 hour long marathon where we met with numerous different doctors, bounced around to different departments, and got swamped with all sorts of not so fun information.

Normally I like to digest for a day before posting but things sound like they're going to be a whirlwind from here on out so I might as well get a jump on things.

Today I met with Dr. V, the reconstructive surgeon. I didn't even have to ask, he actually told me what the difference is between him and the Dr. V who was my plastic surgeon last time. He said that both he and Dr. M are cancer surgeons. So, for me, Dr. M will be doing the surgery and Dr. V will be in charge of the flap that's coming from my leg. But if I had gone to Dr. V as my surgeon then he would be doing the surgery and Dr. M would be in charge of the flap. I guess they are equals in the cancer/surgery world and are interchangeable. Old Dr. V from my previous surgery was only qualified to remove the flap from my arm.

So, where to start with information............

My hospital stay will be from 7-14 days. I once again asked about milestones for leaving the hospital and he said the biggest one is simply 'flap health'. Last summer they had a sonogram type machine and they were constantly checking the flap to make sure that it had blood flowing through it and that it was staying alive. Surgery happens on the basement floor of the hospital, I will then be moved into ICU for a couple of days, and my final stop should be on the 7th or 8th floor of Strong.

The surgery itself will take 8-10 hours.

Dr. M will likely have to remove one of my front, lower teeth before he saws my jawbone in half so that he doesn't accidentally cut through a tooth root. I will need to see my dentist some time after surgery to get the tooth replaced. Also, the part of my jaw that attachs to the skull doesn't break or unhinge, he said it just kind of rotates out.

They will not be able to do another PET scan on me until 8-12 weeks after surgery to see if the cancer spread during the 6 weeks that it took to get the surgery scheduled.

I'm going to have the feeding tube installed this Wednesday and will have to stay in the hospital overnight after the procedure. Here's Murphy's Law at work again. I only have my baby doll on Wednesday and Thursday night this week before he leaves for Myrtle Beach with his daughter on Saturday and by the time he comes back I will have been in the hospital for 4 days after my major surgery. I feel like fate is conspiring to keep us apart as much as possible! Anyway, I've lost 12 pounds in the past 2 months so they think it would be wise to at least stabilize me, if not bulk me up some before actual surgery. Plus, this gives me a chance to get used to the feeding tube before I have 800 other things that I have to get used to.

Nurse Jo Ann pulled out a kit and showed me how everything works. The tube gets changed out every 3 months. I should use the Jevity at room temperature otherwise it can cause a stomach ache. The feeding bag gets discarded every 24 hours. The syringes get discarded once a week. A feeding can be as fast as 10-15 minutes or could take as long as an hour every time. She told me to start slow and then slowly decrease the time to see what I'm comfortable with. I'm going to start out "eating" 3 cans on Thursday, then 4 cans on Friday, and then bump up to 5-6 cans on Saturday. They then want me eating 6 cans every day until surgery. This is on top of the 3-4 CBD's I've been drinking. She doesn't want me to stop doing those because a) it's extra nutritional intake which is good and b) she wants me to keep swallowing. One of the reasons Dr. A decided to forgo the feeding tube the first time around is because a lot of problems occur from not swallowing more than just your spit on a regular basis. I even got to take home a goody bag. Nurse Jo Ann sent me home with 6 cans of Jevity just to make sure I had some on hand. Once I'm discharged on Thursday, a nurse will be paying me a visit at home to give me more training and a supply place will be dropping off numerous cases of Jevity for me.

As it turns out, the ugly long tube hanging out of my stomach will only be for the first 3 months. They then put a 'low-profile' tube in that is flush with my skin and won't really show much under clothing. I was pretty excited about that. I had read on the web that the tube only has to be changed out like once a year but Nurse Jo Ann said I will be getting mine swapped out every 3 months.

Dr. V talked about the flap that they will be taking from my right thigh. The incision length that he showed me was twice the length that I was shown previously. He also said that if they end up needing more flesh to graft that they may need to take some from my pec. He's hoping they don't have to do that but he wanted me aware so that if I wake up with stitches in my boob, I'll know why. Also, he's not sure I have any viable vessels left to use on the right hand side of my neck so they may have to re-open the left hand side of my neck to 'hook up' this new flap.

Dr. V couldn't really answer my question about the likeliness of me needing pain meds or not after this surgery. His only advice was to definitely take them if I need them but I don't have to.

I handed off a list of phone numbers to Nurse Jo Ann. I told her that Justin will be the main contact once surgery is complete but I listed about 10 other people who are authorized to call in and get information about me.

Okay, that's about all that I can remember from this morning's appointment. After meeting with Dr. V, I was introduced to the speech/swallowing specialist (Michelle), then I had to go someplace else to give numerous vials of blood, then I had to go to yet another part of the hospital to pick up some barium that I will need to drink tomorrow night. H and I finally made our escape around 11:00 am this morning.

So, here's how the upcoming activity lays out:

Tuesday 8:00 AM - Meet with the anesthesiologist
Tuesday 8:00 PM - Drink Barium
Wednesday 11:30 PM - Report for surgical implant of feeding tube
Thursday PM - Get discharged from hospital, wait for visiting nurse and supplies delivery
Friday 3:00 PM - One last appointment with Dr. M
Wednesday 2:30 PM - Call to find out what time surgery is and last minute instructions.
Thursday - D-Day

 I would write about fun stuff but it's time for some pain meds and then I'm going to lay down and take a nap so that I have some energy for baby doll's quick visit tonight before he head's out to see his daughter. I can't believe that naps have become such a normal occurrence for me. I would blame it on Scott because he's a huge fan of the weekend naps but I find myself taking them without him more than with him nowadays. <sigh> Guess I'm just getting old. ;-P

August 9 - Part II

Have I mentioned that I have two doctors in my life that I have a total girl crush on? One is my primary doctor, Dr. K because she's on-time for her appointments, talks to me like I'm a real person, pays attention to the details, sincerely seems to care about me as a person, and is simply a sweetheart of a human being. The other doctor is the wife of a guy I went to school with back in the day. She and I ended up becoming Facebook friends a few years ago and through FB messaging, we have made a connection and built a friendship that I truly treasure. You have seen me reference her as Dr. Karen in previous blogs.

I mention this because she has once again given me some peace of mind. I hadn't realized how much the Vicodin dosage thing was bugging me until I received the following e-mail from her this morning. She passed along some great info that I thought other peeps would likely be interested in too so here it is.

First... acetaminophen: the MDD (maximal daily dose) per the PDR and FDA is 4000 mg. This is the hard line/do not cross daily max. BUT... that's like once in a while. When peeps are on the meds chronically we PREFER to limit to around 3000 mg a day so as not to tax the liver continuously. My best advice is to shoot for 3000 but if you go to 4000 that is nbd.

Second.... narcotics. This is all kind of new and different. Effective 8/27/13 NYS is putting into effect something called ISTOP legislation. In order to prescribe ANY controlled substance (which includes narcotics, anxiety meds, sleeping pills, meds for ADD) the PRESCRIBER (aka doctor) has to log onto a state web site, verify if there are other controlled scripts being written for that patient elsewhere and DOCUMENT in the chart that s/he looked this up. If that is done then a 30 day supply can be written. (earlier this year they already changed that there can be NO refills on Vicoden, we used to be able to write for 1 refill and they added other meds to the "controlled" list.) If this is NOT done then the max amount of meds you can write is for 5 days. There are a couple of exceptions but you get the general idea. So... Dr. C is going the easy way and doing the 5 days and making you pick it up. I suspect a lot of people will do this because they don't want to be bothered with the verification.

August 9

The date is set. Surgery officially happens on Thursday, August 22nd.

My immediate feeling was relief. Finally. We're once again moving forward. There is a day on the horizon when the progress of this tumor will be halted. I can once again start planning things and now have a completion date to work towards. I called the insurance company to start the short term disability paperwork. I gave my boss the head's up so that they can move a little faster in finding a long term temp. I started packing the bag I'm going to take with me to surgery as well as the one that somebody will be bringing me after the surgery. Let's get this show on the road so that I can begin the long journey back to recovering as much of myself as will be possible or, let's say it together people, reaching my new norm.

The next feeling in line was fear. I now have the date of when my life forever changes. Again. How hard is it going to be this time around? I keep trying to pep talk myself. I made it through last summer and 6 months after surgery I was training for a 5k, traveling to Florida, as well as dating an incredibly hot man. The devil on my other shoulder keeps pointing out some not so fun facts though. Less than 5% of patients have cancer come back in an area that has already gone through radiation. Healing takes at least 4x longer in areas where radiation has occurred. This is on top of this particular surgery being much more complex with a larger 'flap' being installed. One of my surgeons actually felt that letting the cancer simply kill me was a valid option. My body is still 'run down' from the last go around with this evil beast. And on, and on, and on. I keep knocking the little bastard off my shoulder and telling him to get lost but he creeps back up every time I'm looking the other way. <sigh>

Meanwhile, the benefits meeting at work went really well. Currently, my company has no plans to 'can' me for being out for 6 months, FMLA or not. Should I require longer than 6 months, they will then need to reevaluate the needs of the company.

So, looking at the worst case scenario, if I DO lose my job, I can continue my health care coverage either through COBRA or through some new Obama Care program that's coming down the chute. The guy at the corporate office wasn't so sure about my life insurance. Normally it could roll over somewhere else but he's not sure since there is a pre-existing health condition. He's looking into it for me.

Looking at the best case scenario, if after 4 months the doctor tells me that I can work from home part time, for example 2 days a week a) short term disability allows for that. I would get paid 100% of my salary for 2 days from the company and 75% for the other 3 days from short term disability b) the company already gave me a laptop last year for working from home which I still have and c) my boss told me that he doesn't want me sacrificing my health in any way, shape, or form but the moment I feel up to coming back to work, even if it's remotely and only a day or two a week, he will be overjoyed to have me back. :-)

I never did hear from the swallowing/speech therapist this week. On the bright side, I have now figured out how not to choke on liquids so I'm okay not meeting with her. On Monday at 8:00 am I have an appointment with the reconstructive surgeon. My coworker/friend, H, has agreed to go with me and be my second set of ears for whatever information will be passed along. He hasn't been dragged to anything yet, other than bringing me numerous milkshakes last summer when I was recovering, so it's his turn to step up and be a part of this adventure. I told him to start thinking of questions.

The questions currently in my ever present notebook are: Approximately how long will I be in the hospital?  How long will the surgery take? When you split my jaw in the front, will my teeth be safe? (Do they get chipped, will they go crooked or fall out from trauma?) Do you actually break the jaw where it hinges to my skull or does it simply unhinge once you've cut down the middle? On the day of surgery it will have been 6 weeks since the PET scan. Will another PET scan be done shortly after surgery to make sure the cancer didn't spread during that time? Last year I didn't need any pain meds at all after surgery although they kept checking to see if I wanted morphine. But honestly, I wasn't in any pain. I was told that people with head and neck surgeries often don't feel any pain (although why that held true for my arm where they took the flap from as well, is beyond me). Is that going to hold true for this surgery too? Or because it's more complicated, will there be pain afterwards this time around?

Baby doll has been trained on how to pay my bills and how to update my blog. Unfortunately he will be in Myrtle Beach with his daughter the day I go in for surgery so my best bud, JT, will once again chauffeur me over there. If he really wants to get out of work this year, I might let him come sit in the waiting room with me this time, but no promises. JT will also be in charge of this blog for the first 3-4 days of my hospital stay since he did such an outstanding job last year. Then he goes out of town and baby doll comes back into town at which point he will take over. He is hoping to see me Sunday, 8/25 when he rolls back into town but if it's too late in the day then he's likely to swing by Monday morning before work to say 'hi'. He will then be in a position to keep the blog updated from there.

When I registered as a new patient at Strong, they asked me who they were allowed to give my health information out to. I asked if there was a limit and they said no. So, on the fly, I authorized JT, baby doll, my boss guy, and my mom. I'm going to see if I can type out a more comprehensive list and hand it over to them so that others, like Kunkel or Sammy, can call the hospital to get the scoop if they so desire.


Okay, I think that's all the health stuff for now. Other than thanking all that is good out there in the world for pain killers. Although I just took them at 1:30 when my insomnia first hit and it's only 3:45 now and my ear is already throbbing. Yet another reason for feeling relieved that the date is set. They will soon be removing the cause of my pain!

Fun stuff!

Going to the movies with Kit was a blast! We saw The Heat with Sandra Bullock and Melissa McCarthy. Funny, funny movie. A lot more violent than I expected too. We both enjoyed it immensely! We stopped at Abbott's afterwards and had a good visit.

I took Tuesday off from work and went to the PGA with my sexy and charming man. It was a gorgeous day! We sat in our folding chairs on hole #17, drank a couple of beers, and watched a bunch of professional golfers practice their shots. Good stuff! We then hopped in the car and drove out to Oswego to visit Vic and T. I brought the fixings for dinner with me because any time I have a captive audience to force food on, I'm all over that! I made stuffed mushrooms which were a huge hit with the boys, I brought some chili that I had done up in the crock pot the day before, and I baked some chocolate chip cookies for dessert. We then sat out on their deck, had an adult beverage, and shot the breeze while absorbing the last of the beautiful day. Yet another good visit. :-)

Wednesday I took the afternoon off from work to go thrift store shopping with Elvisa. OMG. So.much.fun! We only made it to two stores but I collected a huge haul! I spent $125 and pretty much purchased an entire new wardrobe in size 2/4. So excited! And I forget how much fun it is to go shopping with someone else. El and I modeled clothes for each other, made fun of some of the crazier items we found, and chit chatted in between. Awesome!

Last night I subbed in on Kunkel's golf league because her partner couldn't make it. I couldn't hit the side of a barn with my ball last night but it was great seeing Kunkel outside of work. I forget exactly how inappropriate and mouthy that little, Italian, sexpot is! She was killing me!

Tonight is a quiet evening at home with the love of my life. I'm making him one of his fave dinners, cajun shrimp with mardi gras rice and I plan on doing a whole bunch of snuggling. I need to start storing up as much affection as I can! Tomorrow morning we get to sleep in and then kick off a late morning with bacon, eggs, toast, and mimosas. Then at 1:00 we will be going on an Adventure Segway tour. Very cool.

I suppose I should go crawl back into bed and see if my body is ready to sleep yet. I'm going to be dragging when my alarm goes off less than 3 hours from now!!

August 5 - Part II

First of all, I'm baffled about this whole narcotics prescription thing. Dr. C said he could only prescribe 5 days at a time so the scripts he was writing were for 50 pills at a time. Today, Nurse Jo Ann had a resident make out a prescription for me. It was for 120 pills. WTH? I thought Dr. C said the 5 day thing was a law..........I really don't get it.

On top of that, Dr. C told me not to take more than (10) pills a day which would total to 3,250 mg of acetaminophen. Acetaminophen being the stuff that poisons your liver. Meanwhile, my primary care doc, Dr. K, told me that she would prefer that I limit myself to 3,000 mg a day. The script I picked up today is now telling me that I can take up to (12) pills a day which is close to 4,000 mg a day. Once again, I don't get it. I would think there would be some hard and fast rules in place when it comes to dosage amounts.

And lastly, it would seem that Nurse Jo Ann jumped the gun in telling me that my surgery was tentatively scheduled for next week. I came home just now to a message on my machine from Michelle (not sure who she is in the org chart). My surgery is currently scheduled for Monday, 8/26. There's a possibility that it could get pulled in to Thursday, 8/22, but Michelle says that it's not likely. So, I still have 3 weeks of freedom left before my worldview once again shifts!

August 5

I have no health updates to report but I think I may be overburdening baby doll with some of my more macabre thoughts. So I want to get back into the practice of using this blog as a therapeutic journaling activity for myself to purge some of my craziness. ;-)

I left a message for Nurse Jo Ann this morning letting her know that I will be running out of Vicodin today. If she doesn't call back by early afternoon then I'm going to have to research other avenues for getting some pain meds. Cue the joke about driving slowly around my neighborhood with my car alarm going off to let the local drug dealer know that I'm interested in a purchase. ;-P Maybe Dr. K would be willing to keep me out of pain until my surgery.

I asked baby doll if he'd be willing to learn ASL with me. He said he had actually been thinking about that a while back. He was concerned that his messed up hand would prevent him from communicating effectively but then he realized he doesn't need to speak it, he just needs to understand it. So, he's in. Have I mentioned lately what an absolute sweetheart he is? I looked up some classes here in Rochester. There's a 10 week fall session starting mid-September. $90/person. That might be a little soon after surgery though. We may need to check back and see if they offer a winter session.

He also mentioned that he did some brief research on the PEG last week. The PEG being the permanent feeding tube that I will have implanted in my stomach. I decided that if he's brave enough to go do some research, then I should put my big girl pants on and do some research too. Unfortunately my big girl pants didn't prevent me from having a good cry last night after I got done researching. I keep telling myself that I thought my arm where they took the flap from, and my neck incisions, and my muffled talking were going to be horribly life altering as well, but I ended up getting used to my 'new norm' fairly quickly so I'm going to keep my fingers crossed that the feeding tube goes the same route. Meanwhile, depending on how much 'feed' I need on a daily basis, it looks like I will be saving quite a bit of money on groceries post surgery. I will only need to worry about feeding baby doll on the few nights a week that he's over. I think a fun challenge will be to continue trying new recipes, being the 'foodie' that I am, without being able to taste test them at all. Wouldn't it be awesome if I became a renowned cook who can't eat?! HA!

I took my tribunal out to lunch on Saturday to the Cheesecake Factory. It was a good time, everyone sharing stories, likes/dislikes, cracking jokes. I feel more than good about putting that group in charge of things. Jamie was telling a story about a mom who recently forgot that the tooth fairy was supposed to pay a visit to her kid and she freaked out and jumped on the internet to find out how to handle that situation. Sammy said she actually did that once with Leila too and she told Leila that the tooth fairy probably couldn't find the darned tooth due to how messy Leila's room was and that if she cleaned it, the tooth fairy would probably make a second attempt to claim the tooth. Sam's motto: "Never take responsibility if you can pawn it off on the kid". I can't tell you how hard this made me laugh. Sam is absolutely the best mother I know and she still manages to do it with flair and a sense of humor!

I've noticed that I've been trying hats on fairly often lately. Everywhere I go, if they have a hat section, I'm over in it, playing dress up. It just occurred to me this weekend why I might have a sudden interest in hats. If I lost more than 50% of my hair with 6 weeks of radiation, I can only assume that I can say goodbye to ALL of it when I start getting zapped with both radiation AND chemo. Now that I'm aware of the probable reason behind my hat fixation, I'm going to start looking at head scarves too. :-)

Our HR chickie set up a meeting for this Wednesday for us to have a conference call with the corporate office. I need to find out exactly how things work with me being out of the office for an extended period of time. I know that the FMLA will only protect my job for 12 weeks and then the company can feel free to fire me if I haven't made it back to work. I'd like to know what that means for my insurance benefits. Dr. M said the likely recovery period will be 4-6 months but could actually take up to a full year. If I lose my job, thus lose my insurance, what happens? This is what I should be finding out this week.

More practically speaking, if I lose my job I can see if I can cash out my 401k and pay off my mortgage. Then I can place an ad to find a roommate or two for my 4 bedroom house and their rent could cover the utilities, vet bills, my cell phone, and other sundry life costs. And eventually, I have to imagine that a job placement agency might be able to locate some part time, stay at home work for me.

Sam and I went to the Park Ave Fest on Saturday. I've been to parties during the festival but I don't think I've ever actually gone to the festival itself. It's pretty amazing! It's one and 1/4 miles long, both sides of the street, filled with food vendors, and crafts, and musicians, and not for profit organizations, and artists, and.......I can't believe I've been missing out on this for the past 15 years! Sam and I only made it about halfway down the entire thing before we decided we had better head back. And while there were a lot of the vendors that we see at the Lilac Festival every year, there were TONS of new vendors that I've never seen before! I went a little crazy buying stuff. I usually limit myself to one 'treasure' at the Lilac Festival. I bought myself 3-4 treasures as well as a few treasures for baby doll as well. Sheesh.

Yesterday was golfing with Sandi. It was a gorgeous day out and with all the rain that we've gotten this summer, the golf courses are simply beautiful. To make it even better, I was having a somewhat good day at golf and Sandi was having a somewhat bad day at golf so for once, I didn't feel like a total loser playing with her! Although even on her bad day of golf she had two chips on two different holes that went straight into the cup. The first one we didn't see because the green was on a hill and when we finally got up there, we were looking EVERYwhere for her ball before Sandi finally thought to look in the hole. Too funny! The second one we both got to see and it was a very pretty ball, and it gave her an eagle on that hole too. A total high five/happy dance moment!

And we interrupt my rambling with a surgery update. Nurse Jo Ann just called to let me know that I can pick up my prescription for Vicodin at the info desk in the surgery center around 2:00 today. She also said they have a tentative date for my surgery. She didn't want to give me the exact day because it could still be bumped. I told her that I just made plans to go to Seabreeze with my best friend from high school and her kids on Friday, 8/16. She said that I will potentially need to cancel that because they're definitely looking at a day the week of 8/12. Bummer about Seabreeze but yay for upcoming surgery! I'm going to have to get things wrapped up with my lawyer by the end of this week though. I don't want to go under the knife with any loose ends. Which reminds me, I still need to teach baby doll how to update my blog and pay my bills. That's going on the MUST do list for tomorrow!

So another benefit to the feeding tube is that I would think it's easy to maintain my weight. This means I can finally get rid of the (8) 35 gallon tubs of clothes that I currently have stored in the basement. I think I'm going to post a note on Facebook first to see if any of my girlfriends want to come get some free clothes, then I'll donate the rest to the thrift store for a tax write-off. And thank goodness Elvisa and I are going thrift store shopping on Wednesday. I tried on 3 pairs of pants this morning, all of which were swimming on me. I decided I had better hit the scale and see what the damage has been lately. I'm down to 111 pounds. No wonder I had to buy a size 2 pair of jeans at Eddie Bauer last weekend! 

Okay, I think I'm about rambled out for the day. I'm going to start purging brain stuff more often so that it's not such a book next time. And now I'm off to pick up my Vicodin prescription.....