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!