Wednesday, September 6, 2017

Where have I been?

    It's been months, and I'm sorry! As I've felt better, I kept thinking, I need to let people know that I'm doing well.
    To start off, I need to clear something up first. I was never near death. I was never going through Chemo to get rid of cancer. Somewhere in my posting, I must have missed communicating that I'm actually fine.  No, really, it's all good, promise. The doctors all felt assured that they got all of the cancer with surgery. So why did I have chemo? (And now radiation, hooray for me) Because before surgery we thought we had caught the cancer within months of it showing up, and then surgery showed that no, the cancer had been there for a year or more. As it was slow growing and not aggressive, it probably had not gone anywhere else. But we all know cancer is an insidious, abhorrent thing, so to be sure that it didn't show up somewhere else, the doctors felt it would be best for me to do chemo. So, I did chemo. In general, my response to the doctors has been, "If that's what you think is best." And now I'm doing radiation because there was some cancer in the muscle tissue, and radiation helps to keep that from re-occurring.  So all the sickness and fatigue has been preventative.
   I had tried to keep posting towards the end of chemo, but oh, my. I understand fatigue now. It started out that I'd have two or three days between infusions where I felt bad, then it was three or four days, and then I just stopped feeling good, at all. The only way to explain it is the truth -  there were days when getting up and making it to the bathroom in time was a struggle, because my body was that tired. I say my body, because my brain didn't wear out nearly as fast as my body. Which is awful. There are certain diseases that trap people in their bodies -  they are all there in their mind, but their bodies don't function. And I know that horror. To hear my kids arguing in the other room, and mentally saying all the things that need to be said, but not being physically capable of shouting, "LOVE YOUR SIBLING!! I don't care if you want to, you WILL LOVE YOUR SIBLING!! And keep the wet towels off the bathroom floor." Not even being able to speak, let alone shout, and so having to pray to Jesus that they don't break each other before their father gets home.
  Why didn't I call you, text you for help? Because I couldn't scroll through my phone, it took too much energy.  I could not even lay on my bed with my phone propped up and move my hand more than once. I so wish I was exaggerating, but I'm not.  Yes, I cried, often. I did my best to choose laughter, but at that point, the laughter usually came after the tears. There were people that did a great job of stalking me, and I so wanted to connect and be with them(still do, actually)but I couldn't. There was no pushing through. There was no digging deep. I found the cold, solid rock bottom. In case you're wondering, it sucked more than you can imagine.
      Do you want to hear the real tear jerker in all of that? According to my doctors and nurses, I was doing well. Yes, I was healthy, and handling treatment beautifully. Let that sink in. As bad as I had it, it was the best that could be hoped for during chemotherapy treatments. When people ask how it was, I say, "I had it good, but it was still Hell." And I know why it went as well as it did.  It was all of you praying for me. It's the only possible reason.  So thank you, from me and my family, and please keep it up, because it's not over yet.
     So then what?
Whelp.  I went back to see Dr. Smellgood two weeks after my last infusion. At that time he said,
"It will take 3 months for you to get back to your baseline of energy." To which I immediately replied,
"No, that doesn't work for me, six weeks. I'll give it six weeks." He chuckled and said that was fine with him. And I threw myself into getting ready for Fair. And I made it through Fair with flying colors! I did lots of walking, and lots of sitting. And I watched other people work hard all week, and promised myself that this was the only year that I would sit it out.
     I still had those awful expanders in, which really added to the misery of everything. Imagine having(what feels like)20lb rocks on your chest.  If you're a guy, think of having your man parts replaced with rocks. You think, no big deal, I can totally handle it.

 But for how long? 

Days? Weeks? How about 7 months? The expanders were put in on December 27th, 2016. The doctor switched them for implants July 26th, 2017. I was so terrified that they wouldn't be comfortable, that the Hurricane would be wrong. Fortunately the relief was almost immediate. After switching the expanders, it was time talk radiation.
     Originally, the Hurricane had said it would be 3-4 weeks after surgery that radiation would start, putting the start date at mid August, and finishing the end of September. Remember earlier when I said I have just done what the doctors thought was best? Well, this is the first time they heard me say no. Back when I was first diagnosed, my longtime friend MiSpring said we were going on a trip as soon after treatment as possible. So the trip got booked to happen in mid October.(We going to Disney y'all!!) I hadn't really said much about it to the doctors, but then the Hurricane said she wanted to wait 6 weeks to start radiation, which I knew immediately would interfere with the trip. I interrupted her and said,
    "No, we can't do that. It won't work." I think she was actually shocked. It's like that moment you realize your kids really are different and you're going to have to try something else with the second kid to get them to behave. Or sleep.  Or eat. It's a betrayal, really. Like, I know it wasn't supposed to be easy, but c'mon!!! I digress.
  The Hurricane of course asked why I couldn't wait, and so I told her,
         "I'M going to DISNEY with MY FRIENDS." It was stated very saucy and rather like a three year old claiming the last donut. And she agreed, we had to start radiation ASAP, because for a cancer patient, a trip to Disney is as important as any other treatment. We're also going on a cruise to the Bahamas, but I was too pouty to take the time to say all of the itinerary.
     Thus, radiation started August 28th. And since we're not quite 2 weeks in, things are going fine. I like the radiation therapists, and my doctor. I haven't come up with a nickname for him yet.
    There has been so much more to life than cancer and cancer treatments, and you should know about it, because it's wonderful, and I want to share it with you. It's just, these posts take time to write, and there is so much I've missed out on, I keep choosing to be active, rather than sit and write.
   But the writing is good, and it's helpful. It reminds me of what is important to me, and it helps me to work through what's happened. So, I'll promise to be back in a few days and backtrack to tell you about some of the other things that have happened. Like my eyebrows. Wowza, have they come back with a vengeance!

Choose Laughter!

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.
DEAL WITH IT
    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

...

...

...

...

Hmm.
Well.
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.

*sigh*

    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!