Ups, downs and ironies

I am sorry it has been so long. I have a post written in my head everyday, but sometimes by the end of the day, sleep wins. Such as it is at times.

Thursday was a great day. I had Mia which always makes me feel better. I don't know where the time goes, though. How does that hour pass so quickly/. Even with the Magnadoodle, we have a nice rapport.

We ran a few errands, including to Heather. A nice little visit with her and restocking of several spices I had been out of. She also made me a spray for my face so hopefully I can calm this rosecea a little before I torture my face more with radiation and chemo that causes skin rash. The Stone Cipher was there too, with some beautiful rocks. I have always had a fascination with rocks and it was nice to talk to someone who really knew about them. He recommended I wear Lapis and Amber as much as possible during radiation treatment. I have a very special bracelet that I believe has lapis. I have some amber earrings but I'm not sure my holes are open any more. I guess I could use them like pins.

We came home and sorted out eating. Hannah was on piano duty this afternoon. Karissa arrived home bubbling over as always. To have a tenth of that energy.

Karen L. came to visit. Wonderful as always. I love talking about school and the kids. I miss them so much, especially the kids in Karissa's grade whom I have worked with since kindergarten. I love using my brain, too. Karen's visits are a special gift.

Sabena brought a delicious dinner and stayed to visit as Karen headed out. Another nice visit with some stories. It is a good thing Kelly knows most of my stories by now or I would have a serious case of cramps in my hand.

Really such a nice day. I went to bed feeling great.

And hacked all night.

In the morning I was goop covered and still coughing. Kelly thought perhaps there was a clog at the base of the trach so he pulled the whole thing and gave it a thorough cleaning. Except then it doesn't want to go back in. Three tries and it is sort of in. I can breathe fine, but there is about a one inch gap between the trach plate and my neck. We put a collar on for security and head out as I have Karen D. for PT at 11.

My mouth is crabby and won't let me lie on my back. My neck is crabby because the trach isn't in quite right. Karen pulled out the big guns and yet I still couldn't completely relax as I usually do. She did tell me my hands wanted to be in the dirt. That isn't a surprise and I am happy to oblige.

We again run a few errands. How can Epsom salts be so hard to find? Two stores are out. I need leach more of this chemo out of my body. The shedding hands are kind of gross.

Crabby slides into bitchy, slides into mad and sad and frustrated. I don't want to be sick. I don't want to be tired. I don't want to be goopy, itchy, swollen. I envy people who eat. I envy people who speak. I envy people who feel good. And I am mad at people who have their health and don't appreciate it.

Unattractive.

And there is crying which makes snot. But with a trach tube there is no back pressure so there is no way to blow your nose. You just have drippy snot.

Somewhere in the middle of my decent into madness, Karina came home. I am not one for crying often. I certainly rarely cry in front of my children. But I melted down for her. I feel bad  because although I know she understands, I also know it really upsets her to see me show weakness. So then I can add guilt to the mix of raging emotions.

An excellent day followed by a crappy day. Ick.

Today was bettter. Much better. Well, except for the puking kid.

We were going to watch a movie Friday night, but Karissa fell asleep on the couch just after six. She refused dinner and is kind of red. Uh oh. That means fever and fever means barfing. Every single time.

Yup, later she wakes up and hurls. Kelly doses her with Motrin, cleans her up and puts her to bed. I move the garbage over by her bed because I know what happens when the Motrin wears off.

Like clockwork, six hours later, in the middle of the night I hear, "Dad!" Normally Kelly hears her, but he is exhausted. Also, as he is supposed to be  blood and not vomit, this really isn't his job. But in he goes.

She had upchucked all over her comforter. He takes that to the laundry room, cleans her up, gives her another dose of Motrin and sends her back to sleep. He crawls back in bed and is asleep in a second and a half.

I was up around 1:30 and again after 5, in addition to the yaking. We are experimenting with the warm air vs.cold air humidifiers and the jury is out. Neither seems to quite be enough moisture but the mask, even on the very lowest setting drowns me. Nubulizing helps but somehow it never happens enough times during the day. At five, Karissa is shivering, so I bring her an extra blanket and bring in the paper. I read a bit and then blessedly fall  back to sleep.

Later everyone is up. Kelly is going to get his hair cut as it is longer than I've seen it since college. Karissa is devastated by the news that she will not be going to ballet. While she says she feels fine and looks fine, if doesn't seem right to share these germs, nor run the risk of her vomiting in the dance studio. There is much crying. She has not missed one class since she started.

I actually got my hands in the dirt! When Kelly built the raised beds, I felt like the double depth was too much. Too expensive. Besides, why would we need beds so tall? But today I was very thankful for those tall beds where I could sit on the edge and do weeding and planting. So much easier than bending down or getting on the ground.

As a cruel irony, in past years our strawberries have come in dribs and drabs. It was pretty much finders keepers, with any seldom making it into the house. This year, they are ripening faster than I can pick. The year when I'm not up for jamming. We do need to get a flat and freeze it, though, so we will have strawberries for the winter.

Another cruelty-- apparently the sweet taste buds not on the tongue must only be far back in the mouth. I bit into a gorgeous, perfectly ripe strawberries. I could smell the sweet ripeness and the juice ran down my hand. And it tasted like absolutely nothing. Sigh.

I gave the peas to Karissa because I have no idea how I'd control a pea in my mouth.

Karissa helped me plant some bush beans and cut the first of the garlic whistles. We picked some strawberries and seeded a few more carrots. I wanted to do more, but I was whipped.

Karina is still on the hunt for a job. Today was talking to someone at the hot dog stand. Karina doesn't even eat hot dogs...

Later, after some rest, I was able to go back outside. I planted a few runner beans. I had envisioned planting a whole block of beans but the body said no. I could barely get off the ground.

The potatoes are blossoming and there are going to be piles. I gathered a dozen just brushing my hand over the ground. The raspberries are getting closer, too. The blueberries are all loaded.

After another brief rest I was able to finally get the cosmos in the ground and pull a few weeds. I still have those bean seeds and some herbs. Also I am looking for a cinderella pumpkin plant.

Aura brought dinner tonight, including a lovely looking cake. I generally do not eat desserts as I don't need the sugar and if you can't taste it what is the point, but I may make an exception tonight.

Kelly has been busy all day as usual. He didn't even get the ballet break he usually gets. On top of yard work and watering (at my behest) and laundry and work he has also had to try to keep Karissa entertained. Life, Monopoly Jr. and a lot of "just a minute."

He is frazzled. He is fried. He is exhausted. He is dropping things and losing his patience. I'm not sure how he doesn't explode some times. I try to help where I can, but there is, unfortunately, a limit to my stamina and ability. This has been a long journey and we aren't there yet.

There is always somebody who has it worse. There are plenty of people who have had four, five, six, or even more recurrences. Multiple treatments. Multiple surgeries. Lots of parts removed/replaced. Some who have been given an "expiration date." Some who are surviving from one treatment to the next, hoping this one will be the cure. Hoping it will stop coming back.

That is where I am. Hoping the radiation and Cetuximab will take care of it and will be done with this. I know the after effects are forever to a greater or lessor degree. There will be discomfort. The feeding tube and blender are my friends for life. Speaking may or not come back.

But there is ASL to learn, and living life a new way. There is loving and being loved by my friends and family. There are stories to hear and stories (for Kelly) to tell. There are books to read, movies to see, and organizing to do. And when I start to slip down the pole of depression, I need to focus on those things because no one needs to hang out in the Pit of Despair.

I will honestly try for tomorrow. I really will.

Love,
Kiara