January 30

Wow, I'm falling way behind in my blogging.............

So, I'm almost done with week two of being back to work and it's killing me. Last week was only a 4 day week too. I ended up going home midday both on Tuesday and Wednesday to take a nap before coming back in to work. Thursday I managed to work a whole day and Friday I made it until about 4:20. Saturday night I slept for 19 hours. That is a sick amount of sleep if you ask me but OMG I SO needed it. This week I've been managing to put in full days, at least around all the doctor's appointments I've had and my body is making me pay for it. Every night I go home I start running a fever. I'm fine in the morning but by late afternoon my body has had enough and it lets me know it. I'm pressing on. I can only hope that I will eventually get used to it.

The Botox treatment didn't do squat. I was so excited for that treatment too! I'm seriously bummed that there was absolutely no change in my saliva production. Especially since the procedure itself was a hell of a lot more painful and traumatizing than I had expected! Even Dr. M was disappointed. He said that it doesn't always take the first time and I can try again. I politely declined. I don't know if my insurance even covered that first treatment. I cringe every time I get my mail thinking I might be billed for it.

The fistula under my chin that started out as a pinprick a few days before Christmas is almost an inch long hole at this point. And goopy saliva oozes through it constantly so I have to keep my neck well wrapped. It's in a really uncomfortable spot directly under the edge of my chin which makes wrapping it really hard. It also means I haven't been able to use my good shower shield since the fistula formed. The hollow part of the shield bumps up exactly where the fistula is so when I try to wear it, it's digging into the fistula the whole time which really hurts. So I'm back to wearing the cheap raincoat bibs that the hospital gave me for showering. I've had a couple of spluttering incidents with them. They're just not as effective as my good, hard plastic shield. :-(

Not only is the fistula getting bigger and bigger but the whole right side of my neck has started to ooze as well. I think there may be a whole new fistula opening up near my ear! I had baby doll look at it last night because it's hard for me to see. He says that he can see that it's oozing but he's not sure he can see an actual hole. Seriously, I'm falling apart over here.

Meanwhile, things are moving along as far as getting me scheduled for the HBO treatments. Those are the hyperbaric oxygen treatments that I think I mentioned previously. They stick you in a see through cyclinder and slowly pump 100% oxygen in with you and pressurize it. The whole process takes about 2 hours (that includes the time to change in and out of the lovely gown they provide). They call the sessions "dives" because I guess it's like going scuba diving. They have to pressurize slowly so that your ears can adjust. Normally people yawn or swallow or drink water to get their ears to pop. Since I am unable to do any of those things, I need to go get tubes inserted in my ears for the treatments. Currently that appointment is scheduled for next Wednesday. I heard from the HBO chick, Janice, yesterday. She got the preliminary okay from my insurance company for the first 20 treatments. She wanted to know if I could get the ear tubes put in sooner so that they could get me started. Not to be too cynical but her urgency has nothing to do with my health. It has to do with the utilization percentages for their machines. They just had an 8:00 am slot open up and the sooner they get someone in that slot, the sooner they will once again be making money with that machine. Personally I think it's hugely unprofessional of them to create stress and urgency in my life just because they're trying to make money. So I told her that I have no idea if the appointment can be moved up. JoAnn from Dr. M's office was nice enough to schedule the appointment for me knowing how difficult it is for me to manage that type of thing without a voice. Meanwhile, they have timeslots of 8, 10, 12, and 2. I think the 12 slot would work out the best for me as far as work is concerned. That way one of the two hours that I'm gone can be considered my lunch hour and the other hour I can make up by coming into work half an hour early and staying half an hour late. Janice says they can start me out in the 8:00 slot and as soon as the noon slot opens, they can switch me over. I told her that should work out okay.

Speaking of not being able to speak. Dr. M removed the stupid trach that he had put in during my tube removal surgery. I can now put my thumb over my stoma and make noise. I'm not sure I would call it actual speech but hey, I can gurgle at you. Michelle, the speech therapist, said it's just going to take a lot of practice. Which I'm sorry to say I have not been doing over the past two weeks since getting the prosthesis working. I need to set up weekly appointments with her and start getting on track with getting myself talking.

Dr. M reassured me at my last appointment that he didn't see any signs of cancer when he was in my mouth/throat removing the tube. I shrugged and commented that nobody saw the second tumor either until they did an actual scan. He immediately countered that by saying that since he was in on the surgery to remove that hidden tumor, he saw the nodulaton and the granularity that went along with that tumor so he now knows exactly what to look for during follow up explorations and he didn't see ANYthing. I felt a little bit better but he's still my half glass full guy which makes him slightly untrustworthy.

I had my PEG (feeding tube) replaced this week. It was easy peasy. Not nearly as uncomfortable as the first time I had it replaced. I had LiLo order me the size smaller PEG this time too. We'll see if that helps stop the leaking that's going on down there. Meanwhile, since there doesn't seem to be a definitive answer as to how long I need to have a feeding tube, she and I discussed getting the more permanent one the next time around. Instead of lasting 3-4 months, it lasts 12-18 months. I told her to go ahead and put it in my file to order than one. There's no drawbacks to it, even if it ends up staying in for a lot less than a year so I might as well go for it.

So other than the HBO treatments, I think I'm now done with doctors until March. In March I go in for the PET scan to see if all this rigamarole was worth it.

In the meantime, I've still been trying to have as much fun possible in life. Jen was up to visit me for MLK weekend. Unfortunately I was running a fever both Friday and Saturday and felt like absolute crap so there was a lot of TV watching going on. I may have gotten her addicted to HGTV now. I finally felt better on Sunday so I had her go through my wardrobe with me and I showed her some of the items I have that I don't have matches for. I have 6-7 tops with no pants that match and a few pairs of pants with no tops that look really good with them. So we took some pictures and then it was off to the thrift store. I have to say, it was THE most productive thrift store trip I have ever had. She helped sort through the racks and fill the cart, she helped judge whether an item was working on me or not, and she put everything back on hangers while I was trying on the next round of items. We were in and out like a flash and I found some really awesome key pieces for my wardrobe!! I told her she needs to fly in every 3 months and do that for me. :-)

Baby doll and I are starting to make plans to head to Toronto for a three day weekend the beginning of April. It's the opening weekend of baseball season and the Yankees are playing. That's the reason for the trip but of course I have my personal machinations in motion. I believe I've wheedled a trip to the Toronto zoo and the St. Lawrence Market during the non-baseball time.

And just last night we started discussing our big October trip for this year. Our incredibly awesome cruise got canceled last year due to cancer crap, fingers crossed that we can make this year's trip happen before I keel over or have to do battle with yet another tumor. This year is going to be 7 glorious days in Las Vegas! Touring all the casinos, doing some gambling, seeing the shows, maybe renting a car and taking some road trips.........ahhhhh.........let the researching of fun begin!

I mentioned that I've become totally addicted to HGTV. They're having a sweepstakes to give away a dream home near Lake Tahoe. I've been entering it every single day. Not that I want to live in Lake Tahoe. I've been watching Beachfront Bargain Hunt on HGTV and I've decided that I will take the cash option if I win the dream home and baby doll and I will be moving to Florida instead. I've had enough of the NY winters, thank you very much.

Speaking of entering things, Reader's Digest is having a contest right now. They want you to write a true story about your life in 100 words or less. I brought the contest to baby doll's attention because one of the things that attracted me to him is that we both have a passion for writing. Sure enough, he's submitted 3 entries already compared to the one entry that I've submitted. :-)

Okay, I've used up what little energy I had leftover today typing this. I'm going to go crawl onto the couch and turn on my HGTV. Type at you later........

January 15

Well surgery today sucked. I was stressing last night about a couple of things. First, I was worried that Dr. Miller was going to have to stretch my mouth open pretty darned wide to get this tube out which would cause me some severe pain afterwards from stretching or slight tearing of the muscles that have frozen up. The other fear that he would shoot me up with relaxer stuff like they did for my biopsy last summer and I wouldn't be able to walk for an entire week due to the pain.

I'm happy to report that neither of those things happened. Unfortunately.....

I woke up having a hard time breathing and once again, I sounded like Darth Vader. It turns out he put a 'real' trach tube in. The trach tube that I put in for a couple of hours each day is a simple rubber tube. A real trach tube is plastic and rubber, has both an inner and outer cannula, and can sometimes come with an inflatable cuff, which this one has. I was not happy.

Here's the note that babydoll sent me right after he got done talking to Dr. Miller in the waiting room while I was still in recovery:

I just spoke to Dr. Miller. Everything went fine.

- NO SIGNS OF CANCER.

- You had some dead bone where they cut you for surgery. May have contributed to leaking pin hole. He removed the dead bone. Tissues and skin very slow to heal due to radiation. Same with the bone. Radiation is both helpful and destructive.

- Hyperbolic chamber in your future. This will provide oxygen to radiated areas and promote quicker healing. He mentioned something like a course of 20 visits. He said this would be a little down the road.

- Removed salivary bypass tube. It came out very easily. It was gunked up. May have added to leaking. You should have an easier time swallowing and controlling saliva now that it is gone. That in addition to the Botox will make things better for you.

- Tried 5 different size speech things. It was difficult to get any of them secured just the way he wanted it, due to the severely radiated tissue as mentioned earlier. He settled on a #8. It is stitched to your skin, and  you have a trach tube to help hold it in place. The tube has an inner and outer whatchamacallit starts with a "c" (cranola? canola?) wear it 24/7 until you see him next week. You can not speak with the trach tube in, but you can "eat" . You can try a Popsicle or fluid tomorrow. After he removes the trach tube next week you can speak and start working with Michelle.

- You can still return to work next week.

- He will have his secretary Joanne contact your supply company to provide the stuff you need for your trach. They will send you home with a bunch of the stuff to get you started.

- He also mentioned that as everything heals up, things tend to constrict. He said he will likely have you back in for another procedure further down the road (even further than the hyperbolic chamber is how I understand it) to stretch things out again for you.

- He will see you next Friday. I don't know if this appointment is already set up, or if we need to set it up. Sorry, I forgot to ask. He also said to feel free to email him any questions.

 

So, the moment I got home I pulled out the inner cannula so that I could breathe. I then eased the outer cannula out to see what was going on. I can see one of the stitches that's holding the TEP (what babydoll refers to as "speech things" above) because it's actually on the outside of the stoma. I cleaned off the outer cannula really well and eased it back in without a problem. I refuse to put the inner cannula back in. I'm going to wear it like this for the next week and 2 days and simply clean it as needed. Feeling like I can't breathe for over a week is akin to torture and I simply won't allow it.

 

Thoughts about the notes above from Dr. Miller:

- I'm not too impressed with his announcement that there's no signs of cancer since there were no signs of the second tumor that they had found imbedded deep in my throat. Plus, the pain has been occurring in my ear and behind my right eye so if the cancer moved, I think it went up. I'll get excited if the PET scan in March comes back clean. Then I'll do a happy dance.

 - My mother will be happy to hear about the hyperbolic chamber treatments. She had mentioned them in an e-mail many months ago and I've read about them a few times in the WebWhisper forum. 20 visits seems like a lot though. I hope they're short appointments so that I can do them on my lunch hour and not miss work. 

- In the release notes that I was given upon discharge, there was a note that said they replaced the malfunctioning TEP. This was news to me. I had no idea that it was not functioning other than it flying out of my stoma a week ago. I thought it was now good to go. I'm worried that because they used an existing fistula and not one that they created themselves, that this prosthesis is stretching it out and making it bigger and bigger. That would be an unhappy occurrence. You'd think that Dr. Miller would be watching for that though. Meanwhile, I looked at the paperwork for the first one and it was 6mm, the paperwork for this one says it's 8mm. If that's the length, then I'm good with that. If it's the diameter, then we're going in the wrong direction, for sure. I'll have to ask Dr. Miller about it next Friday. Lastly, I don't know why he's telling me to eat. The fistula under my chin is still open (and this afternoon it was even bleeding for the first time so I know he was poking at it). So anything I put in my mouth is going to dribble back out that hole and onto my shirt. I'm not going to attempt eating anything until I talk to him about that point either.

- I think I know what he's talking about when he mentions things constricting and needing to be stretched. There were numerous e-mails on the WebWhisper forum about this happening. People's throats start to close up so that they are unable to eat and they have to go in and get their throats stretched back out to allow them to eat again. It didn't sound very painful or unpleasant though, thank goodness!

The one bright spot of the whole morning (did I mention we had to be there at 5:45 am?!?) was that while I was laying in the pre-op waiting room, Dr. Brendan was there visiting one of his current patients. When he saw me he immediately bee-lined over to say 'hi'. I gave him a big hug. It was so good to see him! I haven't seen him for months now and was wondering if he got transferred somewhere! He was such a sweetie when I was in the hospital. He would help me out with my tech problems on all the gadgets I had. He would spend one on one time with me, just talking to me. He made a valiant attempt to sew up my disintegrating throat when it first started falling apart. I really like him. Babydoll said my entire being lit up when Dr. Brendan walked over to my bed today. What can I say, there are some people at Strong who just really get what it's all about. Dr. B is one of them.

Babydoll and I were back home at noon at which point we pretty much immediately crashed on the couch since we were up so early. 

Other medical news for the week. I sent an e-mail to Claire on Monday asking her to send a refill for my oxycodone to the pharmacy. I tried picking it up Tuesday. Failed as usual. I wasn't allowed to pick it up until Friday. I say it's because of my insurance but part of that is the prescription too. The insurance company sees when I should run out based on what was prescribed and they won't fill it before then. Obviously I take it a little more often than prescribed if I'm running out 4 days before I'm supposed to. So, I went to see Claire. She got me all sorts of fixed up. First, she changed the prescription to say that I should be taking it every 3 hours instead of every 4 hours so I was able to pick up the oxy yesterday after all. On top of that she prescribed me some Fentanyl patches. These are worn for 3 days and they continuously release pain meds into your system. She said it will take a couple of days for my body to recognize it but then I should see my need for the oxy to decrease. She gave me three patches to try. They are for a moderate dose. She thinks I'm beyond the wussy dose at this point but she doesn't want to put me on the heavy duty dose yet either. She said to give them a try and if they seem to be working, to let her know and she'll prescribe some more. I put one on at noon today as soon as we got home from the hospital. Unfortunately babydoll and I decided to give each other a little fashion show. He was trying to find a nice outfit for a big work meeting that he has in Syracuse tomorrow. I was trying on some outfits to see what I fit into for the first day of work. Somewhere in all that clothing changing, my patch fell off. :-( Baby doll eventually found it on the floor. It's all dusty, hairy, and no longer sticky. Stupid thing only lasted 9 hours instead of 3 days. I put a new one on but I saved the old one. Maybe I can gently wipe it off and tape it on or something, I don't know. So, between the patch and the increased dose of oxy, I'm hoping to be in much less pain over the next couple of weeks. Keep your fingers crossed that the Botox shots on Friday improve my life even further!

 

January 10

 As previously mentioned, last Saturday was Scott and I's one year anniversary. He got me a couple of books. One of them is a really cool interactive book about designing your own bucket list. I'm going to have some fun with that one! The other one is a naughty one that I'm not going to talk about in this blog. ;-)

I started making him a scrapbook of our activities this past year. I only have 3 pages done so far though so I had to show him the preview of his anniversary gift and now I have to finish it up so that he can enjoy it. I forgot how much fun scrapbooking is but it's also pretty time consuming. And messy! My puzzle room was turned into a gift wrapping room for the holidays and no sooner did I get the holiday stuff put away, it has now been transformed into the scrapbooking room. Pretty cool that I have an entire bedroom that I can morph to meet my needs in the moment.

We were supposed to go bowling on Saturday to celebrate our anniversary but babydoll was really beat. When he stays at my house we're usually in bed by 11 at the latest. When he stays at his own house he stays up until 1 or 2 in the morning for some reason. And last week he stayed at his house almost every single night. That leads to a big buildup of sleep deprivation, hence he didn't get his butt out of bed until something like 2 in the afternoon on Saturday at which point it was too late for us to go bowling because he leaves at 5:30 to pick up Jessica for the weekend. Luckily this week he's spent almost every night at MY house so we're going to try to get up tomorrow in a timely fashion and make it to the bowling alley, for sure.

I've had a few people ask me if I'm going to start back to work doing half days until I build my stamina up. It sounds like the smart thing to do but.........nope, I'm just going to dive right in. I'm hoping that by pushing myself a little, my stamina will bounce back that much faster. I've noticed since treatments have ended and I don't have anything to get up for, I'm spending a lot of time on the couch and I've been taking at least one if not two naps a day. I need to snap out of this lethargy, quick-fast! I told baby-doll that I might be crashing the moment I get home from work for a couple of weeks but I'll make sure the freezer is full of stuff that he can heat up himself. And if it turns out that my body REALLY can't handle what I'm asking of it, I'm sure my boss guy will work with me to find a way to make it work until I can ramp up to full throttle. He's good like that.

I had my hair cut and highlighted this week. I think shorter haircuts need a little more upkeep than longer haircuts. It had only been 3 months since I had gotten it cut but it was driving me nuts and I felt really drab and ugly. My bangs were so long that every time I would try to blow my nose, my hair would fall down and get in the way. I had Jen, my hairdresser, trim my bangs 3 times before I was happy with their length. And the moment they start irritating me, I'll be e-mailing her for an appointment. We were yacking away while she was doing her thing. Typing in a Word document on my iPad didn't slow down our conversation all that much, I was relieved to find. Out of the blue she told me that I should write a book about my cancer adventure. She thinks with my dark sense of humor that it would be a hoot to get my take on things. I told her a large group of my friends had also made the book suggestion. Maybe once I get some stamina back...........


Baby doll and I went to Kunkel's Wheel of Fortune get together on Wednesday night. Fun stuff! It was freakin' awesome to see her on TV and even better that she won!! She missed the bonus puzzle at the end though so she didn't come home too terribly rich but she picked up some nice pocket change. Woo hoo!

Yesterday I managed to pick up prescriptions at Strong and had 3 minutes to spare, according to the parking lot attendant, before I would have been charged. Woo hoo! And that was with the Strong Pharmacy giving me trouble as usual! Although I have no idea what the trouble was. The chick behind the counter rang stuff up and then went and got her manager. They ended up conferring over the paperwork and the labels for a good 5 minutes before he finally okayed her to proceed. I have no idea what the issue was but am unsurprised there was an issue because as you know, there always is one.

Today I had an appointment with Dr. Miller at 11:00. At 11:30 I was still in the treatment room playing games on my iPad wondering if I had been forgotten. Then my nutritionist, Joanna, came in to see me. My weight is up a little again from my last visit. Yay! Although I told her I currently have a backstock of 10 cases of the Jevity because I'm not eating as much as the script is written for. I also told her that I do a syringe feed for every meal and haven't done a gravity feed in months. She took care of things for me immediately. I even received an e-mail from Upstate, the medical supply place, detailing the changes for me. They're going to start delivering enough Jevity for 6 cans a day instead of 8. They're going to skip delivering any food to me at all this month since I have 10 cases backstocked. And it turns out that they have a 'kit' in case a patient does bolus feeds instead of gravity feeds. They're going to stop sending me the gravity bags (thank goodness because I have ~100 of those backstocked!) and instead of only sending me 4 syringes a month, they'll start sending me 30. I was psyched to hear that last part because I just hopped on-line and ordered myself a dozen extra syringes a couple of days ago. I've been finding that they gum up a lot faster than just once a week. I can't say that I need one a day either but I guess that's the only 'kit' they have. Joanna told me that I shouldn't ever have to pay for medical supplies. She wrote down a website for me that gives away free supplies. She said I can also donate my backstocked stuff to them as well so that someone else out there in need can benefit. I'll have to check it out this weekend. Lastly, I mentioned that according to my records, my PEG is supposed to be replaced next week. I told her that I wanted to contact LiLo and get the next size smaller this time instead of trying to gain enough weight to get the PEG to stop leaking. She asked to take a look at it so I showed it to her. I told her that LiLo had said you shouldn't be able to fit more than a dime between your skin and the PEG. I can actually see a good 1/4 of an inch of the PEG which means a whole stack of dimes can fit under there. Joanna said that she would e-mail LiLo and let her know what's going on and have her step me down a size.

After she left I was alone for a bit again and then Dr. Ryan came in. I had been thinking on the drive over to the appointment that at least today I wasn't scheduled for anything that would hurt. Little did I know about Dr. Ryan. Super sweet guy but man, he's really rough! He had me in tears and twitching all over the place with his pushing and prodding at things. I had taken my pain meds at 9:45 this morning so I wasn't due again until 1:45 but when I got out to my car at 1:00, I immediately shot up again. I hurt! 

Anyway, Dr. Miller finally wandered in around 12:10 (for my 11:00 appointment!!). I told him that I took my last antibiotic this morning but I think the hole in my neck is still infected because I'm still leaking a tannish/gray pus. He said he's going to leave me off the antibiotics for now. Not sure why but whatever. He asked if everything else was okay and if I'm all set for my surgery next Wednesday. I told him I was ready. He also finally got a hold of the Botox guy. I guess he was on vacation for 3 weeks which is why he hasn't responded to the appointment request. I am now set to get my saliva glands Botoxed next Friday. 

Phew. That's been my week. As I mentioned last week, I've still been kind of heavy handed with my pain meds. On top of my burning mouth and my infected hole, my ear has been aching again AND I've been getting a headache behind my right eye. Plus the spot where my tooth was pulled is back to bothering me. There was blood on my washcloth 4-5 days in a row last week. Thankfully Dr. Mike had no problem giving me another bottle of morphine to bridge me to next Wednesday when I can hopefully pick up more oxycodone.

I discovered yesterday that I screwed up my thyroid medication again. I was taking the 175mg and Dr. Kranz said she wanted to bump it back up again. So I picked up a second prescription of 25mg pills and started taking them as well. Now I'm almost out of the small pills but I still have like 2 weeks of the big pills. I couldn't figure out why the amounts were so mismatched and then I looked at the bottle for the small pills. It turns out I was only supposed to be taking half a pill a day. DOH! It never occurred to me that a prescription would dictate a half a pill! I'm such a bonehead. So, I guess I'm back down to the 175mg only until I can get the 25mg refilled. At the rate I'm going, I'm never going to get my darned thyroid back under control!

Updates on my resolutions:

I walked on my treadmill for 30 minutes this past Monday. And then that was it. I'll try again this coming Monday to get back into a walking/running schedule.

Peeps have been giving me some good ideas for interesting charities. I guess in Watertown there's a backpack program. You pick up some extra groceries each week and donate them to the program and every Friday, they give needy kids a backpack full of food to get them and their family through the weekend. That sounds pretty cool. I'm going to have to research if we have that in our area. Somebody else told me that you can adopt a family for the holiday season. You then buy them gifts, feed them dinner, stuff like that. I think it's flexible, you can be as involved with the family as you want to be. Lastly, I think it was two years ago that QED participated in a coat drive. There's a charity called Coats for Kids. You can donate gently used children's coats to help fill a local closet that then distributes them. I went to Walmart and bought a little boy and a little girl coat and donated them since I don't have any kids that would generate gently used anything. I like the charities where it's not just about donating money. I like donating 'stuff' so that I know it's more likely to benefit the needy and not be mis-used.

As for making better financial decisions this year....I did not make it to the bank this week to see about refinancing my mortgage. I don't have a good reason for not doing it other than that I'm lazy. I WILL go to the bank either Monday or Tuesday and get answers to my questions. With the appearance of the 60" flat screen, baby doll talked me into upgrading my cable package. Now that I have a bazillion channels, I've been watching more TV in the past month than I have in the past 5 years. This means I'm being exposed to a lot of commercials as well. I saw one for Credit Karma where you can get a free credit score so I checked it out. My credit score is currently excellent at 759. I'm hoping that that will be a big help if it turns out I'm able to refinance a SONYMA mortgage. Another feature of Credit Karma is that they then match you to deals that are going on out there based on your credit score. One of the deals I was shown was for a Discover credit card that is offering a 0% interest rate for 18 months on all balances transferred. I'm thinking that signing up for that might be a good financial decision....I'm still pondering though.

Okay, I think that's more than enough rambling. And if you think it's too much rambling, you can blame my friend ElRay. She e-mailed me last night and said she was having Quinnster withdrawal symptoms and demanded that I update my blog. So this one was with her in mind to tide her over for another week. :-)

January 3

When last I left you, I was heading out to pick up the prescription for the antibiotics. That turned into the usual CF. Wegman's told me my insurance company declined the prescription request because it was too soon to fill it. I told them that was ridiculous, the insurance company is not allowed to dictate when I get an infection. So I left Wegman's while they made some phone calls to find out what happened. Later that afternoon they left me a message. The Strong Pharmacy had see the prescription and filled it even though I had specifically told Dr. Miller that I wanted it filled at my Wegman's. I don't understand how their prescription system works but it seriously sucks. I wish I could dictate that Strong NEVER fills any of my prescriptions but I'm taking a zinc compound and a thiamine compound that Wegman's refuses to fill for me. So I'm stuck getting screwed over by the Strong Pharmacy whenever they decide it would be fun messing with my life. Picking up a prescription at Strong is at least an hour and 15 minute project plus I have to pay for parking. Yeah, yeah, if you're there for less than 30 minutes it's free. Let me tell you, in the hundreds of trips that I've made there in the past 5 months I've only managed to pop in and out in less than 30 minutes one stinking time. It takes 10-15 minutes just to park in their parking garage, and then the hospital itself is huge so you walk for miles just to get anywhere. Then you stand in line at the pharmacy and they do not employee the best and brightest in that place so you're talking another 10-15 minutes to get your goods. Yeah, it just sucks. Anyway, Wegman's had Strong cancel their prescription and Wegman's then was able to fill it for me. So even though Wegman's is 3 miles up the road and usually it's a 20 minute thing to pick up drugs there, I had to make the trip twice because of Strong. I finally took my first pill late Saturday afternoon.

Sunday I decided to go run some errands, do a little shopping. I went to put my trach tube in because I usually wear it when I'm going out in public. It just looks cleaner than a big, gaping hole in my neck. I was sliding it in and there was some resistance but there's always some resistance because my hole shrinks when the trach tube is out and I have to stretch it back out. But then the resistance felt kind of wrong so I yanked the trach tube back out and the speech prosthesis came flying out with it and landed in the sink. Oh shit. I started crying. I spent $250 of my own money on this thing and it only lasted 2 days. There was a plastic tab on it that looked jagged so I assumed I must have ripped something and I had no idea what this thing looked like when it went in so I assumed part of it was still inside of me. On top of that, it had been place in a small fistula in the roof of my stoma which was now twice the size it had been because this thing had been in it, stretching it open. I thought I was choking on saliva before? OMG. So I immediately sent a note to Dr. Miller explaining what happened and asked what I should do. I got a phone call Monday morning that Baby doll returned for me before he headed off to work. Dr. Miller was in surgery all day and Michelle was out of the office so Meredith, the director of speech pathology, wanted me to come in so she could take a look at what was going on. I took Ethan and Sterling in for a final vet appointment first. They're finally recovered from their respiratory infections so they were able to get their vaccinations. After dropping them back at home, I popped over to the hospital. It was good news all over the place. It turns out the jagged end on the plastic tab was where Dr. Miller had trimmed something after he had placed the device. The device itself was whole and undamaged. Meredith actually managed to re-insert it. It took her a few tries because with the safety tab trimmed off, there was a good chance that she could accidentally drop this thing into my lungs which would be a very bad thing. So she messed around for about an hour but finally managed to get it back in. I was once again a happy girl. This time she placed it so the piece of tab that's still attached is facing the front of the stoma. You can actually see it hanging out of the hole a little bit. So now when I go to put my trach tube in, I use a pair of clamps to grab a hold of the tab and I hold the prosthesis in place while I carefully slide the trach tube in. Both Meredith and Dr. Miller said there really should not have been a problem with me using the trach tube with the prosthesis in place, it was a fluke that I managed to dislodge it, but I'm glad that Meredith gave me a way to prevent another fluke from happening.

So that was my health excitement for the week. I've been on the antibiotics for a week now, I was given a two week run, and my neck is still infected. I hope that it starts clearing up soon. I've been in a lot more pain than usual. Not only has my mouth been burning like crazy but the infected hole in my neck is really painful as well. I've been taking the pain meds every 3 1/2 hours sometimes. I'm already on the last bottle of oxycodone that I got from the last prescription. According to my calculations, I'm going to run out of the pain meds on the 10th and insurance isn't going to let me pick up any more until the 15th. I just hope I have enough morphine to bridge me those 5 days. I might have to ask Dr. Mike to put me in for another bottle of that next week.

I was planning on going back to work on Monday, 1/13 but I am now scheduled for surgery on Wednesday, 1/15. Dr. Miller got permission to remove the plastic tube from my throat. It's only an hour procedure but they're going to have to put me out for it so it's an all day affair. Baby doll took off from work so that he can be my person for it. He's such a sweetheart. I also will be making an appointment that week to get my PEG replaced and I currently have a follow up with Dr. K scheduled although I think that will get moved. It just seemed wrong to go back to work and then take a bunch of time off the first week for a bunch of doctor appointments so I e-mailed HR and asked them if it would be okay to push my start date out to Tuesday, 1/21 (Monday, 1/20 is a holiday). HR said it was fine although if I needed to push out any further, we may need to redo some paperwork. I told her if we need to push out any further, heads were going to roll because I'm ready to get my life back to a semblance of normalcy!

New Year's Eve was quiet. I was supposed to get Baby doll because his daughter was going to a sleepover but she texted him around 8:00 saying she didn't feel good so he ended up at home with her instead. She said her stomach didn't feel good but then proceeded to devour some pizza when they got home so we figured she must have been uncomfortable at the party. A bit of a bummer to have our plans kiboshed but hey, that's what happens when you have kids.

I didn't really firm up a good resolution for the New Year. I'd like to get back into training for 5k's again this year. Not that it was fun doing those last year but I felt good about doing them. I'll have to see if my health permits me to start that training again in February. I was thinking that finding 3 unique ways to donate to charity this year would be kind of cool. I'm already collecting the shoe boxes to fill so I would just need to come up with two more ideas. Baby doll had a good one. He's going to try to make better financial decisions this year. I'd like to get on a budget and stay on it. I also want to look into refinancing my mortgage. I've been wanting to do it for a while but I fear that I won't be allowed because I have the SONYMA mortgage for first time home buyers. I finally decided that it's certainly not going to hurt to drive to the bank and find out if I'm allowed to refinance. I'm paying 5.25% interest right now and I have some friends who got rates as low as 3.00%. I'm told so long as you can knock it down by a full percentage point, then it's worth doing it. So those are some of the things I'll be striving for this year. I told Baby doll that I would resolve to survive this year but it would be just my luck that my health deteriorates even further and my life becomes one huge misery that I can't escape. That would suck!

And on that upbeat thought.....not....I'm going to go curl up and find a movie to watch. :-)