Here's the word

It is Tuesday evening and not midnight. I know this isn't quite like me. Once in awhile I'm on the ball.

Today has been an interesting day. I slept quite a bit last night and I actually felt fairly good when I woke up this morning. Only one middle of the night canula pull. I am still really swollen, but while my jaw is still achy, I don't feel like I have an abscessed tooth anymore, so that is a vast improvement.

Feeling better barely withstood the test of getting out of bed. My face is swollen and it has largely settled down along the chin and jaw line. There just isn't that much space in there for all that fluid. If I couldn't open my mouth before, I really can't now. I can barely get the suction tip in there and it is probably only a centimeter.

Kelly went to work, so Karina was again on mom sitting duties. She and Karissa have been at each other's throats for awhile now. Karina feels like we are being too lax and that we were clearly much harder on her. Maybe that was true. Maybe it wasn't. There were plenty of times that her ability to earn back a privilege was artfully staged to guarantee success, largely because punishing her by taking whatever it was away was also a punishment for us. However, Karissa has been getting a pass on some truly atrocious behavior and I know Karina is irritated by it.

With the ten year spread, Karina has really pretty much always been an adult in Karissa's eyes. A third parent in more ways than maybe was fair to either of them. It also doesn't help that they both have some OCD tendencies that definitely do not compliment one another. They both have some clothing issues that cause a lot of drama. This is pay backs for all the times I dragged my mother to a thousand stores looking for an outfit that matched the picture in my head. Clothing purgatory, as it were.

Of course there was arguing about what to pack for her ice skating outing. Anne was blessedly very specific, but Karina wasn't here for those directions. She sounds much like me when she says, "Better to have it than to wish you did." I only said that ten thousand times over the years.

Karissa feels attacked and doesn't have Karina's verbal command, so she gets mad and stops around and acts terrible. That makes Karina madder, which ups the yelling and drama another notch and it spirals from there. Lucky Kelly, he came home after Karissa made it out the door.

For my appointment today, my chemo brain not only committed the wrong day to memory, but also the wrong time. Kelly tries to light a fire under me to go, but I'm thinking we have more time than we do. I wish I had just asked again what time the appointment was instead of being so sure I had it correct. Forgetting things is not normal for me, nor is getting confused. It is very frustrating.

We somehow manage to only be seven minutes late despite my confusion and delay. We had the uber thorough nurse today. She is so sweet, but she really does her job so well it is almost annoying. That must sound ridiculous when I was just complaining about Dr. B being so insensitive. However, there comes a time when I have reached my enough point on personal chit chat and want to see the doctor.

Dr. F is warm and so human. He said he went to the wrong room, just barged right it. He makes me smile. He was extremely impressed with the skin where we radiated. When he looked at my trach wound he actually said, "WOW!" It looks far better than he expected it to at this point. I exceeded expectations! Yay me. Do I get a raise?

The edema is frustrating and is clearly the source of the pain. He does some squeezing and some palpating and agrees with Zachary and Karen; the swelling is leaning on nerves and causing the pain. Because there is only swelling in my face, a diuretic is not a good option. He offers both antibiotics and steroids. I'm not excited about either option. I want Mia to have a crack at it first. I think with her tomorrow, then Zachary again Thursday and Karen Friday that they will be able to bring it down. Zachary was already able to take the pain down to a manageable level yesterday. Dr. F agrees that it is better to let her try than to go right for meds. If it doesn't go down/get better in a couple of weeks, we should call and look at other options. If I hurt this much for two weeks, I may lose my mind.

I am so thankful for his honesty, kindness and warmth. Like Dr. A, he doesn't sugar coat things, but he tells you in such a way that it doesn't sound like the death knell. There is some famous quote about telling someone to go to hell in such a way that they look forward to the trip. I believe he has that ability.

I got to say hello to Rick, my wonderful radiation tech. Renee, my other tech, actually quit to stay home with her kids. Good for her. She will be hard to replace, though. It takes a special person to make you feel okay when you are spitting out goo, bleeding, and generally look like an extra in a Stephen King movie.

We have about fifteen minutes to spare on our way home, so we run into Fred Meyer. It is kind of sad when a 'quick' stop at the store fits in one bag but still costs almost $70. Allergy meds don't come cheap and we finally broke down and bought an electric pencil sharpener, so I really can't complain too much.

Karissa came home quite happy with her success at ice skating. It sounds like she had a better time than last time. Of course having an actual ice skater to help you and give you her undivided attention is a dream come true for her. Thank you Anne for her fun outing!

Of course no evening at our house would be complete without some chaos. Kelly pulled and cleaned my trach and put it back in. I love having it out, but it is much easier for him to get it back in if he does it right away. The edema has closed off my ability to breathe through my nose and to smell anything (everything strangely smells musty like dirt), so I am thankful for the trach.

Kelly was making waffles with Karissa. These aren't Eggo waffles, these are separate the eggs and beat to stiff peaks, etc. The whole shebang. I am so thankful that he is doing this with her. I have cooked a few things, but not much. Some of it is still emotional, but some of it is trying to figure out how you cook without being able to taste, and, at least right now, smell. I want Karissa to have these experiences though.

The door bell rings. It is UPS. Two boxes for Karissa from Grandma Kay. She is over the moon. We cut open then first box and she excitedly starts pulling horses out of the box. There is packing material everywhere. We move on to the second box. We are about half way through when I start feeling cloggy. I ask Kelly to pull the canula. He does, but that sets off a coughing fit and something gets good and lodged in the trach tube. He just put it back in half an hour ago, I know he really doesn't want to pull it again. I can't breathe through my nose, though, so I'm just getting tiny bits of oxygen around the clog. Karissa is shrieking for him to pull the whole thing. There are waffles in the waffle iron and he is sprinting (yes, you read that right, sprinting) around getting suction equipment. Between suction and some powerful coughing, I am finally able to dislodge two big clunkers. It is so gross, but breathing is a very good thing. No one broke anything, I didn't bleed on anything, and no waffles were burned in the making of this chaos.

They enjoyed their waffles after we had a conflict about how they were going to eat them. She wanted to eat them the way she ate them at a friend's house, and we vetoed it based on the potential spillage of syrup involved. We had to invoke the "different mommies, different rules" edict. Thank you for that tool, Barbara. Waffles have little appeal for me as, like bread, they just kind of make paste. I just had some of Anne's lovely lentil salad earlier, so I'll wait for my dinner.

Any moment now, the shower bargaining will begin. I can't even remember when she showered last. She has pen drawings all over her and has developed a faint smell. Perhaps it is a lot more than faint, given that my smeller isn't really working. Hopefully by laying the groundwork about showering all day, it won't be too bad. Maybe even easier than getting her to write Grandma Kay a thank you note.

I have been grossly remiss, and I need to apologize. In my litany of thank yous of late, I left out a very important one. Last week, a large envelope arrived from Denmark. It isn't everyday we get mail from Denmark. In fact, I don't think we ever have. It was from my friend Lena. Lena was an exchange student from Denmark my first year of high school (which was our sophomore year in the land of junior high schools). She lived with my friend Nancy and we had some classes together. Most vividly, I remember we had PE together, the three of us. We talked about the usual stupid girl stuff like leg shaving and boys. Nancy and I sometimes teased her about how she said some things, which really wasn't nice or fair, especially considering I speak zero Danish. She was generally a good sport about it, but would let us know when she had had enough. She was (and is) a kind, sweet, gentle person. It was kind of alarming, even thirty years ago, what the American diet and sedentary lifestyle did to her in that one year. I am relieved that she was able to recover herself when she went home.

In the large envelope was a lovely swan mobile. Lena lives in the down from which Hans Christian Andersen hailed. More importantly, there was a letter. A lovely letter that made me both smile and cry. Funny how someone you haven't seen in literally thirty years can so touch your heart strings. Thank you so much my dear Lena!

Today is also another school mate's birthday. Jamie and I were in the same group of friends. I would say we were good friends, but not really close. Sometime during my drama of the last many months, Jamie was also diagnosed with cancer. She went through treatment hell and is now, thankfully, in remission. She recently was tagged in photos where she appears to be in wedding party. She and I have the same hairdo, although hers appears to be all on shade, unlike mine. A very happy birthday to her today. When you've been through this, "And many more" takes on a whole new meaning.

This is where I leave you today. I have several stories percolating in my head, but they will keep another day or two. I am hoping to tell you how Miracle Mia worked her magic tomorrow.

Until then,

Love,
Kiara