Friday, November 2, 2018

The number one question

How am I doing?

How are we doing? 

That's what people keep asking when I run into them. And I realized that I kinda left everyone hanging as I felt better. So most people don't know how we've been.

In general, pretty well. Of course, it's me, so I can't just leave it at that. There is always a  story. My memory is pretty foggy from March of 2017 until July of this year. There are some things that I remember without trouble and some things I remember if I see a picture. But there is much more that I have no recollection of. For most of the time, after treatment ended, I kept thinking, I'm doing so much better, I'm doing great! My brain is coming back, my energy is coming back, it's all great! In May 2018 my mind started to clear up, and that bit of perspective was disheartening. I saw that things were not great. Not even close. I remember crying to Kenzie during our family vacation, 

"What if this is as good as it gets?" I was terrified that I would never get back to that strong, smart, capable woman I used to be(Or I saw myself as- I may have romanticized myself to...myself). Kenzie's response was perfect,

"I understand your fear, but I'm much more optimistic than you." I didn't believe her. I felt more hopeless then than I did during treatment. I could see who I had been, where I was and didn't know if there was any way to get back to her. 

Then, in July, my brain came back.

Not gradually. 
Oh no, I just woke up one day and my brain worked again. It was about 3 days before I figured out what was going on. It was most obvious with the kids. Apparently, for a LONG time, when I would tell them to go do something, they would walk away, get 5-10 feet from me, then walk back to me, as though I hadn't given them anything to do. And I wouldn't remember either. I know this because for three days, every time I told them to go clean their room or the bathroom or take a shower, they would walk 5-10 feet from me, turn around and walk back. Then they would be shocked that I knew they hadn't done as I'd instructed them. I think after 5 days, maybe a week, they wanted to sit down and have a discussion about how this was not how our relationship worked. I wasn't supposed to be keeping them accountable, perish the thought! If I really loved them, I would have asked you to pray for them during this difficult time of learning that they once again had an aware and present mom in their lives.

At that point, I saw just how far behind I was in everything. What all I had missed out on. Lizzie wasn't a tween anymore, I had missed that transition, she was a teenager. Xander wasn't such a little boy anymore. My children had grown and changed and I had missed it. I can't dwell on that.

Also, the house. Oh. My. Word. The house. Talk about overwhelming. 

I also saw that even though my brain had taken a huge leap, there was much still to regain. I had no executive function. That ability to see all that needed to be done, order it in my head, then execute it, was-is gone. Even the ability to get up and do the same thing every morning is gone. The temptation is to try to master everything at once, but I know enough to know that isn't feasible. So I've been trying to take on a little bit at a time. I try hard not to get discouraged, because the only way I'm going to make progress, is with time. So frustrating. There is no magic pill, no weekend seminar. Just time, and perseverance. And that's where we are now; just one day at a time, moving forward and doing our best to figure out what normal should be for us. Trying not to dwell on what cancer took from us, but to be grateful that it is over now. 

I have made the statement that I am not one of those cancer survivors that is grateful for my journey, for all that I learned about myself. I knew myself pretty well before cancer. I didn't need cancer to help me see who I was, I already knew, thankyouverymuch. 

I did learn some things. Mostly that gratitude is more about the person being grateful, not the person/people receiving the gratitude. If someone wants to thank you, and whatever you did strikes you as no big deal, don't say that. Let whoever it is come up with a way to thank you that satisfies their need. I say that knowing that I can never fully show my gratitude to so many people. People's prayers made a massive difference in all of this. While I did feel the side effects of chemo and radiation, recovering from surgery, my bloodwork always came back healthy. Dr. Smellgood would tell me that my numbers were great, or normal, and I always asked him to clarify, did he mean normal or great for someone going through chemo? Or did he mean that my numbers looked normal or great for someone not going through chemo? He would tell me they looked like a person not going through chemo. I don't think I need to explain how miraculous that is. There is only one explanation for it - your prayers. I wouldn't say that I'm a prayer warrior now; more like, a prayer believer? Having experienced the power of prayer in my life, I see it as the end all, be all. It's where I start now, and I don't stop.  Recently someone was going through a harrowing experience, and I said I'd be praying. Then I felt the need to expand on that. People often feel like prayer isn't that much- that it isn't that active, or powerful. Prayer is active, it is a verb. It is powerful, it the most powerful thing someone can do. Don't demean it by thinking that it's 'just prayer'. 

Dr. Smellgood literally said,

"We are praising God for how healthy you've been," at the end of my treatment. Perhaps because it is so powerful, that's why Satan tricks us into thinking it's not that useful. 

Again, how do I satisfy my need to show gratitude for that? There isn't enough money or words for that. 

There are the physical actions people took as well. I can't list everyone, because I don't remember it all. I do remember - Trisha went shopping for me, Kristin bought groceries and dropped them off.  Cousins that sent me coloring books(those kept me sane). Chele and Valerie took care of my kids, Michelle and my Mom homeschooled them and took care of my house. And so many people fed us. Praise the Lord for all of you. Misti and Adriane - the care packages and the trip to Disney & cruise. Gracious, looking forward to that trip got me through some of the worst days. I desperately want to go back to Disney with my family and with those beauties, Misti, Mandy & Adriane someday(Ideally it would become our annual girl trip).  I could never, never, say thank you, or do anything that will convey the depth of how thankful I am to them, or to all the other people that were there for me and my family.

 The other thing I learned was about priorities. I was a responsible adult. Not that that was a bad thing, but I didn't treat myself, ever. I mean, ever. I was not much of a priority to myself. Now, I am. That meme or statement, 

"Life is to short, buy the shoes"

That is not a joke- life is to short not to enjoy it.  One of the things my cancer survivor group talks about is mindfulness. A question they ask is if you only had today, what would you do? When you meditate on that question, you see very clearly what matters most, what you feel needs improvement, and what you want to take care of _right now_. I put many of my wants and desires on a shelf for later; and if I took anything good away from cancer, it's that you do not know if you have 'later'. Buy the shoes, tell them how you feel, do the thing that scares you. Live. Death is a certainty - but living your life is a choice. I always wanted to live my life to the fullest, but somehow it got filtered out. I want my children to live their lives to the fullest; I can't teach them that if I don't do it myself. 

And the final life lesson- relationships. I had always valued relationships and memories over most anything. But I feel like I take a hard line on things that are divisive and whether they are worth my passion or not. As a Believer, relationships are the only eternal thing we have. The people around us are the only thing we take with us when we die. They are eternal, our relationships are eternal, and therefore, deserve our passion, our heart. I want to put most of my energy in the people around me, the people I hold dear. Of course, I also have to put my energy into making sure there is food to eat and clean towels. It's a balancing act that I used to be pretty good at, and I'm prayinng I will be good at again.
In any case, choose laughter!

Tuesday, January 2, 2018

Good Riddance, 2017

It's more true of 2017 than 2016, but still.

    I had not thought we had a rough year, but I heard Bry-D on the phone back in August with a friend. He had moved out of state for a couple of years and was back, so he had called to see what was up.
Oh. My.

   I don't think he was expecting the story Bry-D had to tell. Starting with cancer diagnosis and surgery in December 2016, & that was supposed to be it. But after surgery we found out I needed chemo and radiation as a sort of prevention. God was good in all that; so many blessings in the midst of such a horrific time.
   About the time I started chemo treatments, our church merged with another church, however, it felt more like it dissolved rather than transferred. We'd been a part of that family for 17(or 16? since it's inception) years. Lizzie and Xander lost a huge part of the family they had grown up with, at a time when they needed them. The consistency and support of every Sunday seeing the Aunts and Uncles of our church family would have been so helpful. We did still have these wonderful people in our lives, but it wasn't like when someone marries into a family and you just have more. It was like a divorce, parts of us were missing and we couldn't get them back. But God was there, through it all; not sweeping in and turning our lives into a Fairy Tale, but He was present.
   We made it through Chemo, reconstruction surgery, and went to Fair. I missed things this year that I've never missed. I had to sit and watch other people do the things I usually did. When my late Grandma got to the point that she could no longer take care of others and was the one needing the help, she became bitter and mean. I vowed then that whatever the reason, if I ever needed help, I would not only ask, but accept and be openly grateful. That ended up being harder than I thought it would be. It took grit and faith that it was temporary, that next time, next year, I'd be back at it. Next year, next year, I kept reminding myself. 

And this too shall pass

  I knew it to be true, but I would have punched anyone that said it to me. I started radiation in September 2017. At that time my instinct with Lizzie was that somethign was wrong with her health. I didn't know what, but by her birthday(middle of September) I was watching her like hard-nosed teacher during a pop quiz. The end of September we ended up in Riley because turns out she's Type 1 Diabetic. Not the worst thing as a child or parent, but certainly life changing. 
   I still had daily radiation treatments, and Eliz had to be in the hospital for at least 2-3 days. It was my last full week of radiation, and we really didn't want to prolong radiation any longer than we had to, so Bry-D stayed at the hospital while Lex and I commuted back and forth. Well, pretty sure Lex stayed with friends and then commuted with me, I'll be honest, I've blocked some of this past year for my mental health. We learned so much, left Riley with a bag of pharmicuetical supplies so big it felt suspicous. But God was there.
  I posted on Facebook asking for prayers when we were at the pediatrician's office and then updated when we had the offical news that it was going to be fine, we just had to learn how to deal with it all. A friend commented on how I took all these things of 2017 in stride. This is the part where the ephiany happened. It was on one of the drives that I did in those 3 days Lizzie was in the hospital learning that she had to do math, literally in order to stay alive. Irony - give the dyscalculic kid an incurable disease that's treatable, but only with math. I was pondering my friend's comment, that I took it all in stride. It tickled a part of my brain. Something about it seemed off. Why was it surprising that I, or anyone would accept tough situations or circumstances. And then the light bulb lit up. 
   We expect life to be easy. We expect to get what we want. But that's not even remotely close to what Jesus promises. He says we'll have peace in trials, that we'll have an adundant life, joy in spite of circumstances, but He nevers says it will be easy. I know He never says we'll get whatever we want in life. My mouth hung open for a moment in shock as I thought,

We're buying into a lie

  Satan whispers sweetly to us,
"It's supposed to turn out your way. You're meant to have everything you desire."

And we believe it. 

We so completely forget that this life is NOT the best there is, that we're in a fallen world that's crumbling around us, we actually get mad a God when we don't get our way.

  So, of course we get mad when any number of things aren't how we *think* they should be. 

   OF COURSE we're injured by God's indifference when the dryer breaks at the same time the car does. Maybe we're even more upset b/c that means we can't get the shiny new something we wanted. When someone gets sick and doesn't get better. When people are sinful and it affects us. I can take it deeper or more shallow, but the simple truth is, it's surprising someone doesn't curse God when bad things happen because Satan has conditioned us to think life is meant to be fair, and when it isn't, the only reason for it is because God isn't who He says He is.

  We should work to change that. Trust me, I'm not saying rejoice in troubles. I struggled with that this year, and I'm not going to suggest anthing I can't do myself. But we need to stop letting Satan get to us with this lie. For me it comes to worshipping whether everything is awesome, or I can barely lift my head from dispair.

  The last 4-5 years I've done the "One Word" for the year. Last year I didn't officially pick a One Word. Had I, it would have been Survive. I typically set several goals for the year, but for 2017, it was simple, 1. get through cancer, and 2. if at all possible, make Jesus proud while doing it.

It's 2018. In Novemeber 2017 God told me my One Word for 2018 - Hope. 
He told me the verse for it too: 

Yet I still dare to hope
Lamentations 3:21

My goals for this year? Take back anything I lost, heal with my family, and Move Forward. I won't be defined by cancer, I won't give it that kind of power. It's not going to steal any more from me or my family than it already has. I won't be wearing pink ribbons or wearing the badge of cancer survivor as though that's all I am. Yes, it happened, but that's just it. For me, it's in the past, and I agree with Edna.

There is far to much to do to be distracted with what has happened. Time to be in the moment, because they come and go so fast, after missing so many lately, I don't want to miss any of them if I can help it.

Choose Laughter

Hope 2018

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!