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........