New Week

Here it is, Monday evening.  I have not done anything spectacular since my last post, unless you find lying around and crocheting to be spectacular.

The pain curve continues. As long as I keep the meds in, it is tolerable, but not absent. While I got some relief from Karen on Friday, it sadly didn't last. The nights are long, with lots of coughing up goo. Last night two canula pulls and two suctionings. The suctioning is good as it clears out my lungs and the trach tube, but bad as I usually tense my face which makes the pain that much worse. Sometimes I am convinced it is the worst abscessed tooth ever, but other times the pain is in a different spot. Karen said the nerves in my face were being compressed. Hmmm....

Today I was draggy, but I did get up and eat. I tried to do more than lie on the couch, but I wasn't very successful. Karissa came home from riding in a good mood, but as soon as food was mentioned, there was spoiling for a fight again. "She's never going to eat that. It's gross. We can't make her eat." And on and on it goes. It doesn't matter that it is food she liked just fine the night before. This is making me crazy. She lost her TV time for yesterday, including the movie we were going to watch together, but as soon as she got to watch today, all bets were off. Was 9 this horrible last time and I've just blocked it out, like child birth?

Thankfully, it was Lesley to the rescue. She offered to have her come over and play. In no way, shape, or form did her behavior warrant a play date, but I don't have the strength to fight with her, and that seems a lot to ask of Karina in the waiting room at acupuncture. On his way to work, Kelly dropped her off.

I managed to get dressed and we actually got to acupuncture on time for once. I had my mini-novella of issues written out for Zachary. I was hoping for some magic. And I got some. The first round of needles did a good job of reducing the pain, but after a few minutes, it started creeping up again. He moved onto the second round of needles. His goal is zero pain. We didn't quite get there, but much better than the 8 I walked in at.  He tries a few different things and he is in agreement with Karen, this is likely not an abscess or necrosis, but nerves being compressed by all the edema in my face. Pitting edema, to be exact. This means when you push on it, you get a pit, or dent, that remains for a bit. Lovely. Apparently the lymph is 'sludgy' in my jaws and is having a hard time moving on its way. I'm not helping it with all the sitting around, but the pain saps every ounce of my energy.

At the end of about an hour and a half, the pain is far more manageable, although I still have a face like a bloated pinata. The right side of my face is more 'jammed up' than the left. This is territory I've been in before. Mia has also used the term jammed up on occasion. If I can make it to Wednesday, hopefully she can do some unjamming.

Zachary also recommends more water. More water to flush out the toxins. More water to help the unwelcome visitor, constipation. More water, more water, more water. Drinking was never my favorite, so a half gallon of liquid is more than a little daunting to me. But I will pour it in the tube. There is only so much room, and at times I get nauseous just from too much water. Such was the case at dinner tonight. Anne brought a lovely dinner, which was thoroughly enjoyed by my family. Not so much me. I just, well you know, was on the couch. Feeling like ick.

Grace was supposed to come over and start us on ASL tonight. I am anxious to get started, as is my family, but my queasiness and funk must have been obvious as Karina offered to call and reschedule. I feel terrible saying yes, but I also feel terrible in general, so yes it is.

Karissa has been wanting to watch Alice in Wonderland since she went to the show last Friday. We were all going to watch it together tonight. It would have been a good plan to check and see if it was on Netflix first. Um, Alice in Murderland is not the same. Fortunately she was okay with Mulan II. And I was on the couch, alternating between the crochet hook and the ice pack. Putting my hand up over my head not nearly often enough. Massaging my cheeks. Please, please let this swelling go down. The screaming nerve pain at 5 am is an alarm with no snooze.

Tomorrow is Dr. F. the kinder, gentler radiation oncologist. Good luck looking in my mouth. I could only open it about an inch, but now I can barely get it open at all. I'll keep prying with the toothbrush and icing and heating, but I don't think he'll be able to see much. If it is a dental issue, I have no clue how anyone would get in there. Zachary says they have a way. I'm not sure I want to think about what that way is...

Anne has offered to take Karissa ice skating in the afternoon. Again, her behavior hardly justifies at trip to the rink, but dragging her to the oncologist's office is punishment for us all. She is generally well behaved as she is a veteran of MANY doctor appointments, but the "How much longer???" does begin to wear on you after awhile. Kelly doesn't have the tuning out ability I have, so it tends to drive him insane much faster than it does me.

Thank you to Zachary for easing my pain and my mind. Thank you to Karina for driving me around and baby sitting me. Thank you to Anne for dinner and for taking Karissa tomorrow. Thank you to Lesley and Meira for entertaining Karissa today. Thank you to Eileen for the fruit and the apple cider. Thank you to Kelly for getting up multiple times last night to deal with canula drama, get me an ice pack, and so forth. Thank you to Grace for being willing to teach us, and I'm sorry we had to put you off this time.

I am hoping for a better night's sleep tonight. I am hoping that the heat and ice helps. I'd hate to think I was wearing the Hannibal Lechter ice mask for nothing (thank you Mary.) Tomorrow more feet moving, more arm moving, more juices flowing, hopefully. And another half gallon of water. Bring me a bucket.

If nothing else, the experiences of the last few days have reminded me how fra-gi-le (it's Italian) I actually am. Unremitting nerve pain and I fold like a house of cards. This made me think about writing letters to my loved ones again. I know it would make me cry though, and the last thing I need is anything else that makes my face hurt.

Also, Dr. Uncle Mitch is absolved of any guilt for the muscle relaxer. We asked for something else, he told us and how he would typically prescribe it. We deeply appreciate his help and are very relieved that there was no name calling directed at him. Dr. B was not so lucky. I will be hard not to look at him and think of his new dubbing. Thanks Mary M and those who chimed in afterwards.

So onward to tomorrow.

Until then,

Love,
Kiara