Rugged Day, Better Day

I feel compelled to tell you, right off the bat, that the phrase, "Fuck the Fucking Fucker" has been given Rabbinic approval. While I know many of you will be more comfortable with FTFF than that particular language, it nice to know that it has been given the seal of approval. In a packed social hall, no less.

Yesterday could be best described as rugged. I don't know if I have ever felt more seriously deep fatigue as I felt yesterday. Apparently, a common side effect of this drug is "flu-like" symptoms. I haven't had the flu in more than 20 years. No, I never get the flu shot. I never get sick. Just cancer four times, but...

So perhaps it was not as bad as I make it sound. It may have been no worse than what people who get the flu annually endure all the time. But it was unpleasant. Desperately needed to sleep, but could not find a position that would allow it. Had to be walked everywhere for fear of falling down. The indignity of realizing that, no, you do not have the strength to get up from the toilet yourself and have to bang on the wall and then have your daughter come help you up.  Not pretty.

By the evening, I was pretty far gone. Stuart and Ellen came by to visit. I have missed them so much, and I gave it my level best, but I was far from a sparkling companion. Not that they expected it. They brought me a great Settlers of Cataan sweat shirt that I look forward to wearing as the fall weather sets in. The OT at OHSU actually worked with me on putting on/taking off sweatshirts a little. My mobility is a little hindered by my neck and my special accouterments...

I was quite relieved to take my last round of meds and crawl into bed. I am sorry that my last day with my sister was not spent somewhere beautiful enjoying the sun and sights, but we did get to "talk," for which I am so thankful. She was an amazing help and blessing to us this week. I don't know how she juggles her very stressful job, her teenage children, my high maintenance parents, and all the rest that goes with daily life, but she does it, and does it very well. I am so proud of the person she has become.

For our special entertainment, my feeding tube has decided to make an interesting noise. Air is kind of whistling out around the stoma. And it is loud. Like hear it across the room loud. And musical, in a strange sort of way. Always something new and fun.


At 4:30 am I woke up for a gurgly trach and a bathroom break. I loathe waking Kelly from a sound sleep, but I know he would rather I woke him with a gentle touch than the sound of me crashing to the floor. I felt so much better. My face was achy, but ice helped. My brain was bright with blog posts, and projects and ideas and joy. I would have beamed a happy smile to all the world if my puffy face was capable of smiling.

I am nervous about what Saturday will bring. We are planning a wedding dress outing. If I feel like I did yesterday, I will be viewing it via Skype I'm afraid. But plans can be changed or moved. Cancer teaches you to be flexible.

As good as I feel mentally, my body is still working very hard. I want to do a hundred things, but it says, UM no. Not quite. Maybe tomorrow. And that's okay. I can blog on the couch, do orders on the couch, crochet on the couch. I can walk outside with a chaperone and feel the glorious sun and let some dirt be under my feet for a little bit. I can take my meds on schedule and eat and commune with my husband. Karissa is on her usual Sunday outing with Angie and Karina is at work. Kelly did the parent meeting at temple and grocery shopped. And got to be alone for more than five minutes time.

He made tomato sauce and canned it yesterday. He did a lovely job-- the color is bright and no failed seals. He is so amazing! And patient. Because he knew the tomatoes going to waste bothered me. I'm sure there are things he would have rather been doing than fooling around with canning tomato sauce.

There is horseradish to harvest if anyone is interested. If not, no big deal. The beauty of horse radish is it will just show up again next year. But there is plenty, and you only need a sliver to grow your own, too. Maybe as the week progresses, I'll get outside more, but the likelihood of my pitch forking up horse radish is pretty low.

There is a bit of plum jam left, too, although I foisted some on Stuart and Ellen and need to get some next door as well. Angie assures me there a plenty of plums lefts, so another shot at jam is in the offing. Kelly brought me flowers today too, because sometimes you just need something beautiful.

Keep looking ahead. Rest when needed. Eat well.Focus on total remission.

Until tomorrow,

Love,
Kiara

PS-- Don't know if I mentioned my doc at OHSU found another trial I may be eligible for-- a PD-1 inhibitor. However, because I started this new chemo on Friday, I might not be able to get on it. However, I am thankful he continues to look. I will continue to work on ridding myself of the Fucking Fuckers with this treatment.