Living and Active

So, some people know about my kidneys and others don't. It's not as sexy as cancer, but yeah... I've got bum kidneys. It's a dual disease of Barters syndrome and Gitelman's syndrome. (I'm all about them syndromes!). Basically what it means is that I've got about 30%-40% function in my kidneys, and it's been decreasing more rapidly this past year than it has in the previous 4 combined. That means the degeneration is speeding up. A lot. When I was at the Mayo Clinic last Thanksgiving, I saw another specialist. She looked at my history, and the rate of decline of my kidney function. I asked her "How long till you think I'll need a new kidney?" She paused and looked at my chart and said "Ummm... probably 4 or 5 years."

Boom. FOUR or FIVE years?!?!?! I had thought I was at least 10 years out. That one sentence hovers in my mind like a gargoyle waiting to pounce. I've heard about transplants. They are not fun. Things never quite go back to normal afterwards. Shoot, I'm scared to even get to the dialysis stage!

I have a vivid memory of before I was diagnosed with cancer, when my body was going even wonkier than usual. (Yes, that's a real word. I checked!) I was with a group of girls from my church. I can't remember what we were doing there. I think it was a class of some sort? At the end, we ladies were all in a circle praying. More like a cluster really, laying hands on each other or something like that. I was sitting on the floor with my head against a friend's leg. Randomly (or not so randomly) someone started praying about Psalm 139 and how "fearfully and wonderfully made" we were. At that point the levy broke, and although I was silent, the tears flowed in a stream down my face so fiercely that all I could do was watch them drip onto my jeans, creating a dark puddle on the denim. Gina (who's leg I was resting on), was the only one who saw me. Although we didn't know each other very well, she just stroked my hair. It was the best thing anyone could have done for me in that moment.

M tears weren't flowing freely because I was comforted. They flowed because I was frustrated. Possibly angry. I can't remember exactly. I just remember thinking "If that girl knew what my body was doing to me right now, there's no way she would pray that. At least not to my face. There's no way that I am "fearfully and wonderfully made". I feel like a consequence of the fall which marred the perfect world with genetic mutants like me."  It felt like an old wives tale, like "You shouldn't go swimming for 45 minutes after you eat." There's some truth to it, but nobody really believes it to the fullest extent. Is it true for some people? Probably. Is it true for everybody? Not really. We've all broken that rule and come out just fine. We just say it to kids to get a general principle across. Fearfully and wonderfully made feels like that: one of those phrases that healthy people throw around to comfort sick people. Is it true for some? Sure. For me? Probably not, or at least not completely. Maybe generally.

Fast forward to last Sunday. A woman who is a spiritual mentor of mine challenged me to read and meditate on Psalm 139 this week. Although I doubted that I'd learn something "new", I did it. The word is living and active right? It can speak to us in new ways each time. I read through it 3 days ago and tried to garner new meanings and new insight, but I got nothing. It was the same Psalm 139 that I've read a thousand times before. But I kept hearing her voice in my head, so I did it again today. I study the word like I do everything else: like a nerd. I like to go to the Greek or Hebrew and read it line for line, studying the translation of each word. I didn't do that last time so I decided to do a legit study today. Nothing jumped out at me until I got to verse 13.

"For you created my inmost being;
    you knit me together in my mother’s womb."

I've seen "inmost being" also translated as "inner parts". However, the way it was translated on the site that I was on was odd, so I clicked on it to see what the literal Hebrew translation was. Would you like to know what the literal translation is? Kidneys. Psalm 139:13 literally says "For You have created my kidneys..."

(Go see for yourself: here and here)

Living and active my friends. Living. And. Active.

2:28 am, and still awake

This usually happens.  The night before chemo, I have a hard time getting to sleep.  There is this real conflict of... something... emotions probably, but it feels like a blend of thoughts and emotions.  Maybe it's the chaos as my brain tries to break up a fight between my positive and negative emotions, and thus my brain joins the fray.  Whatever it is, it is fairly predictable.  John caught onto it a lot earlier than I did.  Sometimes I'd be cranky.  Other times I'd be all emotional.  Either way, John knew that he was going to have to take a deep breath and whether the storm, whatever that might be for the night.  It was a lot better for us once he gently gently brought this to my attention.  (It was probably prompted by me saying some thing like "What is wrong with me tonight?!?  I feel so... so... so something.  Anxious or something..." To which he probably wrapped me in his arms and said "Yeah, I've come to expect that the night before chemo".  me: "What? I do this every time?" John: "Yup.")  So there you have it.  Mystery kinda solved.

Unfortunately knowing the source and the cause doesn't necessarily make it go away.  There's that part of me that is praying that all my gorging on pineapples has lifted my platelet levels, and I'll be able to do chemo tomorrow.  The good news will be: I don't have to delay chemo more!  The bad news will be: I have to do chemo now.  Ewwww... Me no likey.  BUT BUT BUT!!!  The really good news (best case scenario) is that if I can do chemo tomorrow (technically it's "today" but I don't consider tomorrow today until I've actually gone to sleep and woken up.) So, chemo tomorrow, and then Dr. Le could possibly say "We'll do a week and a half gap instead of 2 weeks, and do your chemo next Wednesday".  This would put me back on track without any delays.  At that point, after that one that is a mere week and half away from now, I will only have ONE MORE SESSION!!!  Tomorrow is third to last.  After I'm done with that one, there there are only two more!  And after that next one, there is only ONE more!!!!!!  That's totally doable.  I think it is anyways.

So, no deep thoughts tonight.  Just a dance of anxiety and hope.  It's a rather elegant dance though, if I do say so myself:)

A little better, a little worse, and the emotional gamut

Sorry this is tardy!  Our internet has been on and off all weekend. 

This round was not nearly as draining as the previous several.  The last couple of times, I pretty much slept for 3 days straight, and was mostly incoherent for several days after that.  I was actually awake during the day for this one!!  I was still tired, but it wasn't like I had gotten hit by a mack-truck, like how I'd felt the last few times.   The nausea has been much worse though.  The glass half empty mindset would say "Uggg... if it's not one thing it's another".  I think I'll choose to go half full on this puppy and say "Good thing they aren't all coming at the same time!"

These were my thoughts this weekend.  I've run a pretty wide gamut of emotions today though.  Here are the verses that I was really "feeling" today: (read all the way to the end, or you'll get really depressed)

Lamentations 3:17-24

"My soul is bereft of peace; I have forgotten what happiness is.  So I say, "My endurance has perished;  so has my hope from the Lord."


Remember my affliction and my wanderings, the wormwood and the gall!  My soul continually remembers it, and is bowed down within me.  But this I call to mind, and therefore I have hope:

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.  "The Lord is my portion," says my soul.  "Therefore I will hope in him."

Such is the ebb and flow of the believer who is experiencing difficulty.  I love Psalms, and I love the lamenting in general from the Old Testament.  They didn't sugar coat things.  If life kinda sucked, they said it:  "Life sucks!", but in beautifully poetic language of course:)  But it never stays there.  It almost always inevitably follows that the writer remembers who God is.  It isn't some saccharine "Let's turn that frown upside down!" kind of crap.  It is knowledge.  The steadfast love of the Lord never ceases.  His mercies never come to an end. 

There is a worship song we used to sing back when I lived in Santa Barbara.  The chorus was "Why are you so downcast oh my soul?  I will yet praise You, my Savior my King."  I always identified with that.  It's an honesty followed by discipline.  It is the honest cry of someone who feels (FEELS) a hopelessness within them.  And it is the discipline of reminding themselves of the truth.  I know what I know, whether I feel it or not. 

I was laying there in the hospital today feeling the first part of this.  "My soul is bereft of peace.  I have forgotten what happiness is."  I feel very strongly that when I am feeling like this, it is because I have been starving myself from the word.  I have not been reading.  I have not been praying.  I have not been plugging into the the one that gives hope in the face of hopelessness.  So I read a little.  I prayed a little.  I meditated on the goodness of my God.  And like water flowing onto a plant that is nearly dead, I could feel myself rising from the depths, and a twinkle came back just a little bit into my eyes. 

I can usually gauge how I'm feeling by how "possible" I feel like it could be for me to be a mom.  I know that I'm having a good day, and feeling good, when I start thinking about having kids.  It is those days that I have enough energy to feel like "I really want to be a mom.  I could do that".  I guess I weigh my ability to do something in the future by how I am feeling in the present.  If I have energy, then I tend to plan optimistically, because future hard work feels possible based on my current amount of energy.  However, it is usually inevitably followed within either hours or days, by the stark contrast of "Who am I kidding? You don't get sick days as a mom.  How could I ever take care of someone else when I feel like this all the time?  I can't even take care of myself."  This didn't start when I found out I had cancer. But then again, we really don't know how long it had been there, so maybe it did.  Anyways, today was a first.  Today was the first day that I have ever felt crappy AND thought about wanting to be a mom simultaneously.  (to quote Zoolander, "Just thinking about it was the most rewarding experience I've ever had!!"  haha!)  It may not sound like a lot for some people, but this was a big deal for me.  It's some part inside of me that is having a spark of a hope that I can have a normal life in the future.  I still may not.  But it's nice to daydream about it though.