Friday, May 26, 2017

School's out!

     3 infusion's left and school is done, I am so relieved school is done. My fatigue level is only increasing, and the kids have become lackadaisical with chores and entertaining themselves with non-electronics. I can't deal with that; I can't monitor them and hound them to get them back on track, either. For the last month, I've been telling them that things were going to be getting an overhaul. 
     I guess they had forgotten that I'm not an idle threat, count to 3 and do nothing mom. It started with their IT Dad setting up a wifi router just for their stuff(tablet, computer, etc.) that is programmed to only be on from 3pm-9pm on weekdays and 10 am to 10 pm on weekends. That means no wifi at all, until 3 pm, and, little secret - we don't have cable, all their stuff is Netflix and YouTube Kids. Evil, but I like it! Then on the last day of school, Wednesday, I presented them with these. 

    Saying that they were not thrilled is an understatement. It is, SO much, they just can't even. You have no idea. Just. Seriously?!?! 
   Oh yes my loves. There will be no entitlement in this house.
Your father and I are intentionally raising you this way.
    The left side is required for electronics, except when it is the whole family. If everyone is watching a movie or show, the lists don't matter. The right is extra stuff, mostly the things I would do that nobody else wants to do. You'll see on the lower left is a payment plan. That cheered them up until I pointed out the right side, where they found that they were going to be paying for their electronics use, and some other stuff. 
  Oh, guys, if looks could kill, shoo-whee! Darling, it's time to learn that very little is actually free, and to be responsible, sometimes we have to forgo what we want for what is necessary. Then the bomb was dropped that parents can take away money for poor behavior, and there are no guidelines for how that works. Our track record for discipline has been that we are reasonable, so they know we won't take everything away on a whim or moment of anger, thus it had the desired effect - a healthy dose of respect for Dad & Mom's power. Of note, we're using fake money that they can cash in for the real stuff.  I'm not going to try to mess with making sure I have enough real cash around. There is a whole system for how all this works that I'm not explaining here unless you really want me too.
    I explained the why(again) that we didn't want them spending endless hours on the computer or the tv, and we can all tell I don't have the ability to monitor them, so these lists are the best option. They understood it; didn't like it, but they got it. We tried to make sure they saw that we're not wanting to be mean or ruin their lives, there are some good lessons to be learned if they are willing.
    Thursday was the first day, and no one earned electronics. It was awful for everyone, but I think it drove my point home. The whole family had become too reliant on devices. At first, the kids had no idea how to cope without a phone, tablet, computer or tv. So they came in our room(where I rest and Bryan has his computer) and whined about general life issues, and to be a nuisance. We kicked them out repeatedly, and finally had to explain that they could go do what was on the lists- look at them, there are fun things to do on them, pick one and GO AWAY!! They ended up outside until just before bed. And, THEY LIVED! I kid you not, they lived through it. We were just as shocked as they were, really. No, but Bryan agreed it was still going to take some time, however, it's a good system.
   My mom was over today, and Xander got his things done, so he's happily watching tv now. Lizzie is at a friends house, but she did not get things done so we may have to add a clause of some sort. Summer, here we come!

Choose Laughter!

Wednesday, May 17, 2017

Chemo Brain, 'cause memory is for boring people





So, I have no idea why we're here. Or what's going on.
-me, frequently throughout the day

    See the blank areas of this page? My mind is like that now. Filled in some areas, completely blank EVERYWHERE else. It's not fun on a daily basis, but it does produce some stories. I used a hand motion the other day with Bry-D. It looked more like I was violently playing the piano than that I was trying to say 'bathmat'. I was sputtering,
      "The, the thing, the thing!"   Luckily, Bry-D knew what room I was talking about and was able to fill in the blank.
     I got Eliz's application for camp sent in, a week before the deadline. I got an email to the effect of, "We're so happy you applied, however..." I had put her birth year as 2017. In two different places. Also, I had only sent in one part of the health form. Well, nobody is perfect.
     This hits me in my pride, much like my hair loss. I have an excellent memory. I can go way back and recall all sorts of things, and frequently other people recall things they had forgotten because of my memory. Unless we're talking about 2017, then you need to find a different source, because I have no idea what's happened. I have to put all sorts of things in my phone, on the calendar, that didn't need to be done before. I recently started using a couple essential oils for memory and focus. What's the funny part? Well, I have to remember to use them!
   What is difficult for people to understand, is that even with a reminder, things don't always get done. Because if I get a reminder on my phone and shut it off, then something shiny flashes by me, that reminder was worthless. I can write stuff on paper, on the chalkboard, but if I don't look at the paper or chalkboard at just the right time, they do me no good. Things are just gone, ZAP, no evidence that they even existed in my conscious mind.


    Things aren't terrible, as frustrating as it sounds. After infusion tomorrow, we'll only have 4 treatments left! Almost there, almost there! We're mostly on time for school to be finished next week, though we'll be doing math and language for most of the summer. But we'd be doing some kind of schoolwork throughout the summer anyways. Since surgery, I've only been getting 1,500 steps a day, occasionally I've gotten over 2,000. I set a goal to get over 2,500 every day this week. So far, doing well. Sunday I took a walk and got all the steps in at once, so I came home and slept for a couple hours. Learned my lesson, short walks, like, to the mailbox and back. Also, no talking on the phone during walks, that's way to strenuous. Freaked the Quilter out with that, though she's a worrier and it's not hard to do. We've been having people bring us meals again, such a blessing! For awhile I was able to cook frequently again, but we're back to once or twice a week. With 4H getting in full swing, Lizzie is cooking more too, so that helps as well.
    Bry-D has been looking for a truck, which we need. 1. Because the Malibu is 20 years old and sounds like it's going to fall apart, cartoon style, at any moment. I swear the only thing holding it together is the Holy Spirit and PTL for that! I have told many people that I would not be surprised if everything fell off of it, and Bry-D was left sitting on nothing, in midair, holding the steering wheel. 2. It's time we started hauling Eliz and the horse to clinics and shows ourselves. We're also looking for a 2 horse trailer, may have found one, so that's good. However, have to have something to haul the trailer with, see point one. Our friends have been so gracious, and they have helped so much, but it's time to cut the apron strings on this. 3. Since getting rid of his old truck, we've realized just how handy it is to have a truck! I hope to write a post soon showing you his truck and the trailer!

Choose Laughter!


Tuesday, May 9, 2017

The ray of hope

Bry-D kept telling people on Sunday that I over did it during the weekend, so I decided to start telling people that it's his fault I over did it. I stayed up way too late on Friday night, and then he took me out on a date Saturday, so it's his fault I was so exhausted on Sunday. And Monday. And today. The truth is that the treatments are having a cumulative effect, and I'm more fatigued with each passing week. 

Today is the 6 month anniversary of diagnosis. December 9th, 2016. The day after my 39th birthday. I can't believe I can say this, but it has gone by quickly. It hasn't been easy, but it has gone by faster than I anticipated. The days have been long, the days have been hard, but the weeks and months have been short.  

I met with the plastic surgeon, whom my mom calls the Hurricane, and it fits, so Dr. Hurricane said that I have been healthy enough that she can finish the reconstruction before we start radiation. That news turned into a huge ray of hope for me as she explained that we would put off radiation for 3-4 weeks after the swap out surgery. Dr. Hurricane said that if I decided to expand a little more, it would add a week to the pushing back of radiation, so I'm going to expand a little more, just to get another week of no treatments in before moving on to radiation. The surgery will happen sometime at the end of June, first of July so I'll have a reprieve from treatment in the middle of summer, Hallelujah! It will coincide with 4H Judging week and Fair, even bigger Hallelujah! The idea of trying to do Judging week and Fair week while getting daily radiation treatments was giving me nightmares. 

And, I want to remember what it feels like to me again. Because I honestly don't remember.  Neither Bryan, Lizzie or I can remember what I look like with hair. I used to remember what I was like, this woman with all this energy and ability, plus great glossy black and purple hair. But she's gone, and I want desperately to get a glimpse of her again before I undergo more treatments. When you diet, you can totally take a break. Same with going to school for a specific degree. There are so many difficult journeys you can be on, and take a break. Get away, revitalize, recharge and prepare for more. Not so with cancer and chemotherapy. There is never a day, or a moment, that you can escape the feeling of it, the knowledge of what is going on inside your body. I know that before diagnosis, I got up early in the morning and hit the ground running, rarely stopping until nighttime. I rarely get going now, and even if I do, it doesn't last, or it's painful. My kids kind of remember the mom that played with them and had the energy to go, go, go. They give me grace every day and settle for snuggles and kisses instead of running around. I think if I get those few weeks of no treatment, I'll be better able to mentally handle the radiation, and whatever it does to me.

I hated the idea of chemotherapy before diagnosis, and now that I've been through it, I despise it even more. So I wonder and ask God, why did you tell that chemo was the direction You wanted me to take? Why did You want me to feel so sick, so tired, so not me? Was I not grateful enough for what I had? Was I not sympathetic, empathetic enough? At one time, I used to try to go through difficult times and just learn the lesson God had for me, without thinking of getting a reward for making through a trial. Now, I'm all about the blessing. Where is it, gimme, gimme, gimme da blessing. I want a reward, I want something amazing to come from all of this, because with more difficult days than good, it's getting harder and harder to convince myself that just getting it right is enough for me to get through it. But as I said, I have a ray of hope.

I look forward now to the end of chemo in a way I hadn't when I thought it would be a week or two then back to treatments again.  I'm hopeful for having the energy to take a walk around the block with the kids. To go swimming with them, and actually swim. To ride the horse, help with the horse! Guys, guys, GUYS! To eat food and have it taste good!! To not have to worry if I'll have the energy to do something. To cook again, care for my home again, pull an all-nighter of sewing again!!! Ah, the things I'll do, the list I'm going to check off! 

Choose Laughter Everyone!