February 16

The poker game was a blast and my swelling was down enough that I could see to play. Early on in the first game I had a full house and was wheedling bets out of people all around the table and getting really excited about my hand. Turns out Andy had a better full house. Bastard. Totally scooped me. Who invited him anyway?? That was the first scoop of the evening but there were more to come for and from other players as well. At one point Jer totally screwed over poor RayB. I ended up calling RayB out of the room where I locked and loaded the marshmallow rifle that I had bought for baby doll for Christmas. I handed it to RayB and told him to go blast the hell out of Jer. The marshmallow gun ended up being the highlight of the evening. It's always something with these guys. Ha!

So, the swelling. It's come back a few times but not nearly as bad as it was in the pictures I posted in my last blog. Twice it's come back bad enough where I feel my sight was too impaired to drive but otherwise, it's stayed somewhat under control. And just to be clear, Dr. M said lymphadema was his 'best guess'. And he used that exact phrase. For some reason one of my friends thought they knew exactly what was wrong with me which made me laugh. I'm not sure I ever get that definitive of an answer from anyone in the medical world,

The nose spray that Dr. M prescribed me is wonderful. I'm allowed to use it 4 times a day but I try to limit myself to once a day. a) I don't want to build up a tolerance to it (if that's even possible) and b) I'm okay with the fluids in my head finding an escape through my nose for the most part. It's just when I'm trying to sleep or don't have access to tissues that it gets annoying.

Huh, you might say. When would she not have access to tissues? Well, when I'm in the hyperbaric oxygen chamber for instance. They don't let you take ANYthing in there. I'm glad they at least let you wear a hospital gown. Two of them actually because it gets a little chilly in that tube. I had the tubes put in my ears on Monday. That was a little uncomfortable and not quite what I expected, as usual. I find that I don't ask enough questions any more. I'm so resigned to everyone and everything prodding and poking me in any manner possible that I just don't care any more. So, some totally new doc, Dr. N, numbed up my ear drums, then sliced a hole in each of them and stuck a little tube in. Supposedly they will fall out on their own ~ 6 months from now. I will likely not even notice when it happens. Meanwhile, my hearing has become kind of muffled, distancy and echoey. No idea if that's normal or not. No idea if that will go away as my ear drums heal and the tubes fall out or what. Whatever. It's a question I will eventually remember to ask of someone, somewhere along the way. HBO treatments started on Tuesday morning. The first one sucked. Janice, the nurse on duty, took away my drool washcloth and gave me one of theirs to use instead. By the time my hour and a half session was up, I was nauseous and my tongue was burning. I asked her if they use detergent and bleach on their washcloths. She said, of course. Um, okay. I told her that wasn't cool that I had it in my mouth for almost two hours and that from here on out, I'd be keeping my own washcloth, thank you very much. She winced. I think she realized the mistake we made with that and I've been allowed to keep my own washcloth ever since. The treatments themselves are okay. You know when you go to the drive-thru teller at the bank and they have those little containers that you stick your banking in that then get sucked up the tube and into the building? Imagine a life size version of the little container. I lay down on a gurney and get loaded into a glass coffin basically. They pressurize it and then I either nap or I watch the TV that's positioned right above the unit. I can bring in DVDs to watch too if I want. Luckily they have cable so I usually just watch HGTV and doze off and on for an hour and a half. No idea if it's working yet or how soon it will start working. I had baby doll take a picture of the hole in my neck on Sunday night so that I would have a benchmark. Remember, this is the fistula that was a pin prick that opened a few days before Christmas. Now it's the size of a nickel, if not bigger. Hence the need for the HBO treatments. I read that the HBO treatments main use is to help heal wounds that have been open for 4 weeks or longer and are not healing themselves. Anyway, I asked baby doll what the white thing is that I can see in the hole in the picture. He said it's something skeletal, he just doesn't know what. I also had Sammy look at the hole when she was here yesterday. She asked why she could see a screw inside of it. I was like OH! Dr. M told me that he could see the plate they used to fuse my jaw bone back together when he looked in the fistula. That must be what she's seeing too. Um. Gross?

Currently, Dr. M has me scheduled for a CT scan on Wednesday morning. It interferes with the HBO treatment though and I asked Janice if I could be bumped to a different time slot for the HBO but she said no, they're full that day. So, tomorrow I need to see if the CT scan can be moved. Dr. M scheduled the CT scan just to verify that there's no other, underlying reason for the swelling happening in my face. He's going to check on my juglar veins too to see how blocked they are and there was talk about removing them. He said he takes them out all the time, no problem. I was really glad Sammy came up to see me yesterday because when I repeated this to her, she was just as shocked as I was. We both thought that juglar veins keep you alive! Guess we're both wrong. I'm not going to worry about that whole thing until after the results of the CT scan. A secondary benefit of the scan is that it will look for cancer in my head and neck as well. I'm assuming I'll still be getting the full body PET scan in March to check for cancer but it's kind of nice to have a mini-scan in the meantime just to check on things.

So that's where my health stands at the moment. My next big worry is what to do about work. It looks like I could get to work by 10:30 - 10:40 each day after the HBO treatment but just thinking about trying to put in 40 hours after missing 2.5 hours every morning makes me sick to my tummy thinking about the energy levels needed to do that. Boss guy was already unhappy during the two weeks that I was back to work because he could tell the company wasn't getting 100% from me. Not that he was mean about it or anything, he's just trying to protect the interests of the company. Which is perfectly understandable but unfortunately, I was not only already doing the best that I could, I was doing too much since I was coming home with a fever almost every day. So, what are my options? Can I work part time? Can I afford to live on part time pay? Would my company even want me part time or would they rather be rid of me? What are my health insurance options if I'm part time? What does full time disability encompass? I'm assuming if I'm out on full time disability I definitely no longer have a job and the state is taking care of me? Does that come out of my social security benefits or something? Can I live on 60% of my salary? And again, what happens with health insurance? I really need to get some of these questions answered. I'm assuming I should start with our HR Dept. at work and hope they can steer me from there. That will be my project for the upcoming week though. 

During round one with cancer, I had a list of health goals. Not sure if it makes sense to reinstate that. Here are some of the things I'm striving for:

- Healing of fistula in neck
- Healing of swampy areas on neck
- Healing of exposed jaw bone
- Healing of all open sores inside of mouth 
- Alleviation of all swelling in face and neck
- Replacement of missing tooth
- Swallowing capability (no more drooling!) 
- Food and drink consumption through mouth (no more PEG!)
- Better movement of head and neck, more mobility
- Cessation of hands falling asleep at night
- Cessation of off and on earaches
- Hearing returned to norm
- Speech or whatever will pass for speech

I feel like they are all really long term goals of at least 6 months - 3 years, rather than shorter term goals like the last set that I had. So it might be more depressing tracking them. It's unclear. One thing that I decided to start tracking last night was a general health barometer. Andy was telling me that his wife Kim gets these really bad migraines, then when they finally go away, she's up and running around at 150mph until a migraine lays her low again. He said it's hard to say if her over-doing it is helping to cause the migraines or not. I told him that I think I know how she feels. When I'm feeling good, I'm up, running around, trying to get a billion things done because I know that soon enough I'll feel like crap again and will be laid out flat on the couch doing nothing. And baby doll says the same thing about me. Is the fact that I'm up trying to accomplish so much part of the reason that I'm laid flat out again the next day? I don't know. And I don't know that I want to test the theory by wasting any of my feel good time. But I did decide to start charting my feel-goodness in general. I woke up at 2:30 this morning and felt awesome! I immediately sat down and e-mailed baby doll because I owed him a catch up e-mail and so long as I was feeling good, I figured it was a good time to get it sent. I went back to bed around 3:30 and was up again at 7:00 am. My jaw was killing me. Ouch. Ouch. Ouch. I made nice with the pain meds and crawled back into bed. I woke up again at 11:15 this morning. I felt so-so. Jaw was a little achey but ignorable, my face was doing the swelling thing though which is uncomfortable. So, I've mostly had a couch day today. I've been taking the pain meds every 4 hours on the dot to keep the jaw pain at bay because it's been nagging all day long. My hope is that by charting some of these generalities, I can start to see some kind of trend. We'll see. I'll report back after 4 weeks of tracking and let you know if I found anything.