Not Wonderful Wednesday

I have debated about blogging when I am this cranky, but decided better out than in. However, if you aren't in the mood for whiny and cranky, skip this post. Hopefully tomorrow will be a better day.

Pain is the primary driver of my bad attitude today. Last evening there was a lot of pain, which meant a not very restful night's sleep. The pain carried over into today. I haven't been able to quite pinpoint the cause, although I have a few theories. The muscle relaxers and Tylenol take the edge off enough to make it tolerable, but at times, just. My right jaw hurts. Perhaps aches is a better term. I can't chase down the source, though. It could be strictly mechanical, which is the most likely culprit. Between the closing wound and the furious scar tissue, there is an awful lot of pulling going on in my neck. When I saw Zachary yesterday, he said it is kind like a stuck thermostat. My muscles have forgotten how to unclench and the relax button needs to be reset. We did quite a bit of work yesterday, particularly on trying to improve my range of motion. I'm not sure if we did something to trigger it, or if the three tiny needles he left in my neck are causing the uproar, or something else.

It could be necrosis of the bone due to all the radiation treatments. There was a spot that looked like it before I started treatment, but it healed up during radiation, if that makes any sense at all. It also could be something as simple as a cavity. Unfortunately, a cavity is anything but simple at this point. No, I can't have dental x-rays as I've had far too much radiation already. No, I can't get my jaw open anymore than 3/4", so I have no idea how anyone would get in there to look at it let alone treat it. A filling would be tough enough, but if I needed a root canal or for them to pull it, nope, can't do that either.

Then there is the other thing it could be. I don't even want to speak of it. At all.

In addition to the pain in my jaw, there is intermittent pain on the edge of the trach wound. Right where the bottom edge of the trach sits and digs into it unless there is a pad underneath it. We have experimented with various pad configurations. Some worked for a period of time, but as the shape of the wound changed, they were no longer as effective. Today we have been back to trying to slip a pad under the edge and have friction pin it in place. It hasn't been very successful, I'm afraid. The pad is most effective when it is completely secured behind the face plate of the trach. However, that means to put on a clean one involves pulling the whole trach. When they get goopy it is bad enough, but then they get dry and stiff and become less of a pad and more of a torture device.

I am very tired due to the ongoing sleep disturbance. Between my pulse pounding in my ear, hacking up goop, sliding down the incline, screaming nerves in my hands/arms, and goo in my mouth, it seems I never get any solid sleep. I know exercise is the best thing for me and it would improve my attitude, but damn I'm tired.

I have been doing many of the easier exercises often during the day. Arm lifts, leg kicks, Kegels, and using my chin crutch (thank you, Rebeca). Still there are more I should be doing, as well as just being up walking and active. Ah, if only Facebook and crocheting were as beneficial.

Today the fencing crew arrived to tear down fence. Several sections of our fence have been being held up by a variety of braces, rebar, and even by the gas meter. It will be very nice to have a fence that we don't have to worry every time the wind blows. Also having gates that don't require you to know the secret code of lift, push, latch in order to close them, will be nice as hopefully there will be fewer dog escapes. The chickens were quite put out with having to stay in their little yard today. By tomorrow they will be dragging little tin cups down the chain link and singing prison songs. When this is all finished, their house and yard will need a good cleaning. There's some exercise.

Anne came by and picked produce with Karissa. She also took Allie and Karissa for a walk and was treated to the Karissa show on the trampoline (conveniently relocated up by the sliding door due to fence work.) Karissa was happy, and enthusiastic, and eager to show Anne around. I am thrilled that she is so comfortable with people. I love her bubbly personality. I so appreciate Anne (and many others) for coming and being a positive adult. Still, I wish it was me. Not every time, but more often than it has been of late. While the "look at this, look at this, look at this" may get annoying at times, you miss it when it's gone. I miss being as much a part of her life as I had been.

Karina and I talked about wedding stuff and looked at pictures of dresses and such. Dates are being narrowed down. They are close on a venue. Karina was surprised at how expensive a photographer is. I didn't think the prices were that bad. Actually they are the same or less than I paid for a photographer 24 years ago.

Tomorrow morning I have Dr. B, the chemo oncologist. We'll see what he has to say. I have to ask him about the weird stuff going on on my scalp. It is the festival of ingrown hairs, which, in spots, have massed in to larger yucky sores. Zachary said something about using apple cider vinegar to clear the pores up there and that he had heard this was common after chemo. I cannot imagine how badly vinegar would burn on these large sores. I'll just go back to using scalp tonic from Heather. I stopped when I first started getting sores, but they got worse without it and seem to improve with it. Shampoo seems to make it much worse, so I'll skip that for awhile. It isn't like it's long enough to be greasy.

In the afternoon, we go to see Karissa's end of ballet boot camp performance. The ballet words have gone better than I thought, although we haven't done as much at home as we probably should have. I think she only missed three on today's practice test. Not bad. Not bad at all.

I am really hoping for a good night's sleep and a better attitude tomorrow. I have PT on Friday, which should help the pain, too. I am limping along to get to next Wednesday for Miracle Mia at last. My pit crew is all wonderful and amazing, but she gives me the most pain relief.

Thank you to Sarah C. for our delicious dinner last night. Thank you to Anne for your wonderful visit. Thank you to Rebeca for sacrificing part of a pool noodle for my chin crutch and for taking Karissa to Alice in Wonderland on Friday. Thank you to those of you who post items to my facebook wall to cheer me up. (By the way, I have received such 'interesting' gifts over the years, it would be hard to narrow down to just one.) Thank you to all of the people who commented on my blogs with such kind words and encouragement. Thank you to my family for coping with today's meltdown as best you could. Thank you to my sister for letting me live life vicariously through her once in a while.

Get well wishes to our dear friend Michael G. who had his appendix out yesterday. He must be feeling better as Lesley took his car keys and cell phone to keep him from working today.

Until tomorrow, unless the weird stuff on my scalp turns out to be Beri Beri or something...

Love,
Kiara