Thursday, March 28, 2013

The third cup


I went out for a walk this morning.  It was cold, it was windy - like I knew on step number three that I regretted not wearing my snow pants - but I figured if my friend Donna can get up extra early to do her workout, then I better quit pouting and slink out of bed a few hours later and get my butt outside moving.

It was pretty invigorating.  I'm having what I think might be some cartilage problems with my knee, or maybe a loose tendon or something, but I keep walking until that says "head home", and it felt pretty good.

And stop the presses on this one - I even ran a few poles.  If truth be told, it wasn't anything like running - more like a faster walk, or a slow, slow jog - but I did it to elevate my heart rate a little.  I just wanted to see if I could still do it.  And I did.  Then my port-vein started to yell again, so I stopped.

And I smiled in my little victory.

After physical therapy on Tuesday, I had a port flush.  They graciously squeezed me in because I forget to call and schedule such things - and I was given one of my favorite chemo nurses.  We talked a while and caught up on how each other was doing, then I had her feel my port tubing that goes into my jugular - it hurts when my blood starts pumping.

Ports are such wonderful inventions, but I have hated mine since day one.  It wasn't placed well - it gets in the way of bra straps.  It sticks out quite a bit - in fact sometimes if I am in a thin shirt I will tap it and say "beam me up Scotty" when no one but Scott is around.  It bothers me when I sleep - it feels like it kinks if I lay on my side.  It has been even more troublesome since it was included in a mammogram last year - yeah - think about that one for a while.  It's placed right at the edge of the spot they need to "grab" - and they either have to not include it and miss some flesh - or grab it and squeeze it in the iron grinder press.

The mammogram technician assured me it wouldn't bother it.  Then, when it was indelibly pushed into my skin for all time and I was pretty sure it was going to pop through, she noted that I didn't have enough fat to protect it...... I could have told her that before.

But because of the way my brain works, I haven't been such a big fan of this thing.  I did the first three months of chemo without one, so I reasoned that I shouldn't need one.

Then, "they" told me that chemo ruins your veins.

Oh, that makes perfect sense.  So pump it right into my heart and jugular then with a port.  I see.

So I lay in bed at night feeling my blood pump through there and wonder if it is clotting around the tubing in my jugular where I feel it most, and if so, will one of those little clots break free when I run or exercise harshly.

This is a side effect of the "half-assed-medical-knowledge" brains, of which I have one.  You know enough medically to think of such things, and don't know enough medically to reason it all through.

So I pointed it out to Leah, my good-chemo-nurse and she felt the kink in it, but thought it might be  instead a suture holding it in place, and that it might be causing me to feel it more when I was exercising because of course, my blood was pumping harder then, trying to squeeze quickly through a vein crowded with a tube and suture in it.  She said to be sure and show it to my doctor again, but she noted that she had another patient who was a runner and complained about the same thing.

Whew.  Relieved, and glory-be, she compared me to a runner.... I've been a pretty solid couch potato for quite a while, and here I was just bumped up the fitness ladder a bit because I was out walking at a decent clip for my condition.

For a couple of years I used to go out every morning at 5:10am sharp and do a mile loop.  We don't have any street lights here in Cinnamon Lake and it was downright dark some mornings.  I was starting to recognize constellations for the first time in my life.  I loved the feeling of getting fresh air pumping into my lungs.  I loved the release of endorphins when it was all over.

And honestly, that's about all I loved about it.  One barely twilighted (twilit? spellcheck doesn't know what to do with this word...) morning, I jumped over a snake warming itself on the road.  I thought it was a stick until as I was stepping/jumping over it and I saw it move.  If you knew how I felt about snakes, you will understand the outright lies I had to tell myself to get myself back out there the next morning.

In fact, I lied to myself pretty regularly over the whole idea of getting up, slapping on some clothes and running shoes and getting outside in any weather, any temperature and start moving.  If I could hear the wind whistling and knew there was going to be snow on the ground, I told myself I would just go to the STOP sign and turn around.

Two-tenths of a mile is better than no-tenths.  

At the STOP sign, I would tell myself in the bitter cold icy wind, to just go to the speed limit sign which was two-tenths of a mile further.  When I had completed four-tenths of a mile out, I knew it was useless to turn around and to just suck it up and finish the mile loop.  

On those mornings I would come back in with ice dripping off of me and tell the still-sleeping-Scott to feel the ice on my coat.  I would do a pretty loud "warm-down" and tell Scott a few times that he had a pretty tough wife.  I was downright unbearable on such mornings - I had conquered the elements to get in my whole one mile loop.

I neglected to mention the fifteen lies I had told myself to just get out of bed and get around the loop.  No, uh-uh.  I went all "coach" on Mr. Coach himself, and told him how glorious it felt to conquer the weather and the dark and the wind and sleet.

Especially, when I was back inside a warm house.

So, I know I'm being kind of wimpy now.  I know I can get outside and get moving even in two inches, four inches, three inches of snow.  I know how to lie to myself enough to get my body out there.

Now, I have to lie to my port site as well and tell it to just calm down.  Calm down and play nice with the rest of my groaning body.

I just have to do it.

***

We had a snow day on Monday.  I know about a million school kids were awake and cheering and happy as all get-out, but I wasn't so much on the cheerful side with the whole thing....

But then, that blasted wet snow that showed up in late March had two little people I know very happy.  They showed up in our front yard, and proceeded to build a huge - like gigantic - snowman.

It was like all of the elements came together to create the perfect snowman building day.  It was wet enough to stick well together.  It was deep enough to roll big balls.  It was the perfect temperature - not freezing ice cold.

The amish kids around our neck of the woods all thought the same thing - there were about 56 amish snowmen all complete with old straw hats erected the same day.

The snowman in our front yard had a carrot nose.  And a hat that was engineered by Popop - my candle holder that was sitting on the front porch was placed on his head.  Popop thought it was ingenious; Chloe, Zoe and I were a bit dubious.

But there was a lot of laughter, a lot of rolling up of big, big balls of snow, and while three very heavy huge globs of snow were being stacked on top of one another by two big guys in the front yard - two little girls suddenly decided they were "reindeer" and promptly started playing "reindeer games" and pranced about in the deep snow.

They wiped away some snow in our driveway and found stones to make his eyes and smile.  He looked friendly as all get out.  Then, he got the red sheet that is used for odd projects wrapped around his neck for a scarf.  He was that big.

I don't think we should have snow in March, but if we do, this is the way to spend the day.

They came inside, we had hot chocolate with lots of marshmallows, because we have extra bags of those on hand due to the fact that one never knows when Melvin the Moose or Ballou the Bear who greatly loves marshmallows and can eat them quickly, will show up.  We sipped and sat and watched the well-fed-birds out the back window.

Chloe snuggled up to me and said her ear hurt.  I put a warm dish towel over it and asked her if that made it feel better.  I found her a heating pad and she laid on the couch with it.  She asked me to sit with her.

There are few things sweeter in life, than slowing down on snow days, that turn into sick days, and sit with a little one on the couch and chat a little while she - a little dramatically - holds the warm heating pad on her ear.

Then she fell asleep.

Zoe and I made a recipe I had been wanting to try with them - little bird's nests.  It was pretty easy, but pretty amazingly cool when finished.  She was pretty pleased with the outcome.

As we formed the "nests", she looked keenly at the malted-milk-eggs that would go next into the nests and commented that we would have "robins nests", due to the blue eggs   Then the white eggs would be a "chicken's nest".  Another color was going to be an "eagle's nest".  Then she told me she wanted an eagle as a pet.

I looked over my glasses at her, but she was happily naming the eggs in the nests and encouraging them to hatch out.....  She has spent maybe two years of her short life of nap times studying bird books - her favorite being Popop's that is heavier than our Bible that she lugged around for bedtime reading every time she was here - but she knows more about birds than I do about gardening.

We then went up and "played baby" for a while, and then Chloe woke up with a fever, and they went home.

The house is so quiet after they leave.

***

A couple of weeks ago I stayed with Addy and Millie-bean for five days while their mum and dad went on a business trip.

I told their folks I was pretty sure I could do the kids, I just wasn't sure the house would be standing when they got back.  They packed the refrigerator full of prepared food so I wouldn't have to think too much about accidentally cooking something that would engage their allergies and/or intolerance to wheat products and tree nuts, so I was going to do just fine.

And we got along really well.  I went to bed each evening right after their 8:00pm bed time.  In fact, I might have been sleeping before they closed their eyes a couple of nights.

On Friday, we planned to pick up Addy close to noon after kindergarten, then load up the car and head up to Cinnamon Lake to get Popop in on the fun.  Addy was especially looking forward to this, as we had promised her a play-date with her favorite "oe-s" - cousins Chloe and Zoe.

Then, it started to unravel some.  While Addy was at school, Millie and I loaded up the car with most of the items - and there ended up being many even after I had told them to "pack lightly" - but apparently "babies" had more suitcases and carriers and seats than anyone.  During a quick lunch, I was standing at the counter chatting with them across the island sitting on stools happily munching down lunch, when suddenly - Millie in mid-word disappeared.

It was like a cartoon - she was there one moment - and the next thing I knew - SWOOSH! she was gone.  She hit that hard tile floor like a bag of potatoes.  She cried.  We cried.  I knew she was hurting and felt so bad for her.

Then she looked at me while I was holding her, tried to smile and said "are we ready to go?  Popop will be waiting on us!"  She limped a little, but put the proper blankets over her baby's carrier to make sure she would be warm and well cared for, and we packed up, snapped up, locked up and left.

Then, realized we forgot something, unsnapped, unpacked, and unlocked.

After snapping again, packing again, locking again, realized we had forgotten something else.  I felt a little bit triumphant as I at least had the car in reverse this time.

This happened FOUR TIMES.  FOUR TIMES we forgot something.  The last time I even almost made it Polaris Parkway and seriously struggled in my mind trying to decide if I could just lie and say "NO! THAT NEW TEDDY BEAR SAID HE WANTED TO STAY HOME - HE's DOING A STAY-CATION - HE DOESN'T WANT TO COME ALONG WITH US!! YES, HE TOLD ME THAT!!"  But I weighed out the miles and miles and miles of anguish against the two miles and three red lights of turn around time, and decided to go back.

Plus, by that time, we all had to go to the bathroom.

The whole one hour and twenty minute drive, which just turned into two hours with the multi turn-arounds, Addy talked non-stop about her planned play-date the next day with her two favorite people in all of Cinnamon Lake, except of course for Grandmum and Popop she informed me sideways - her cousins.

"What time do you think they will be at your house tomorrow morning, Grandmum?"  I told her she was in kindergarten and should not be reading clocks yet.

I smiled when I told her that.  I did.

"We could have a big breakfast and invite them down for that!"  I looked at her sideways in the rear view mirror.  These girls wake up with the first ray of sunshine when they stay at my house, and I was trying to remember what time sunrise would be, and then turned over in my mind if we would we be ready to take on four gleeful, happy, screaming girls at 7:10 in the morning....

Addy's mind is non-stop.  You can see it in her eyes.  You can almost visibly see the atoms around her body moving as her brain is whirling.  "I KNOW!! I KNOW!!  We can play at your house, then we can go down to Chloe and Zoe's after lunch!!"

That was a good plan.  Better to share the delighted screams with others.  And who knows, Grandmum might even sneak in a nap on that plan.  

And that's how Addy and I ended up spending the afternoon in the ER at Wooster Hospital.

Everything, everything went according to plan.  We got to our house, made careful gluten-free pizzas so no one would have any reactions, read our bedtime books, and went to bed nice and early.

All of us.

And as planned, we woke up extra early for a Saturday morning because not so much the non-sunlit days of February, but more because of the rackus bathing activity of the 3,428 birds Popop feeds taking baths in the spouting on the house eaves.

Most mornings, it's a nice way to wake up.  But this Saturday, I was ready to shoot those dang varmits.  Please, give me time to get coffee at least before the Shawnees let out their war-cries!!

The birds were especially excited because the 20 pound bag of bird seed that had been purchased by the man of this house and sat on the front porch for two weeks, had been finally ripped open by something, and they were having a downright pagan-feast-festival at 5am in the morning.  Eating and squawking and bathing noisily together all outside the window of two tired girls.

No need to worry about what time the sun was going to show up.  If ever.  Heck no, we have Wild Kingdom living the wild, rapturous life outside our front door, kicking it up on my dime.  

I mentioned to Scott that he might have put away that bird seed, giving us maybe another hour of sleep.  Neither one of us, neither one of us even thought or remembered what had happened the last time Addy handled that bird seed a year ago - you know the bird seed bag that comes from Walmart labeled as "BIRD SEED" but has walnuts in it for some reason.

Addy is allergic to walnuts like some kids are allergic to peanuts - read: "exposure = emergency".....

So as we all played inside, and yelped and yelled and screamed with delight and played and played and argued, made up and played some more; as we prepared lunch with the idea that then they would all move the party to Uncle Scotty's house and we all had a good time, the sinister bird seed was splayed across the front porch from rollicking-good-time-loving-birds, just waiting, waiting.

And as they left, the girls all saw the multi and many birds on the front porch eating the bird seed and they all took their gloves off and got more bird seed and put little piles all over the porch, then the yard, "so the cute little birds could eat".  I pointed out that they were pretty fat already from being over-fed, but they continued to put out little bird seed piles.

And as I mentioned, NEITHER ONE OF US EVEN THOUGHT ABOUT THE DANGER LURKING......

I stayed at home and started to clean up, and Scott called and said that Addy's lip was pretty swollen - they thought she had fallen - it was that kind of big swollen.

Instantly, INSTANTLY, if finally hit me - THE BIRD SEED..........

My body, that had been planning on taking a nap and was already beginning to shut down, suddenly went into hyper-alert.  Scott brought her back to our house, I dosed her immediately with a double dose of Benadryl, and upon seeing her lip swollen alarmingly realized what my fifth turn-around should have been - THE EPI STICK!!

I had forgotten it.

I said some things about feeding free-loading-birds and was a bit upset that we had the same bird feed on our front porch that had caused a reaction with her the year before, then Addy started to cry and I told her it wasn't her fault, and we snuggled up on the couch and I turned on a movie.  I kept checking her throat every five minutes, and it looked red and swollen a little, but wasn't changing.  I didn't know if she had some sore throat with her cold, or if is was an allergic reaction.

I gave her another dose of Benadryl after an hour, when her lip was still not changed.  I waited another fifteen minutes, and when the swelling had not gone down, I decided we better wait out the rest of this closer to a hospital..... Even if it was not going to get worse, I was concerned about re-exposure, and even though we had all washed and changed clothes and Scott had cleaned up the front porch - what if there was one little drop of walnut oil somewhere, and she touched it, then put her fingers in her mouth again, there was a possibility that it could get worse....

We loaded up and even though Addy hates, hates, loathes doctors and medical facilities, she got in the car and she and I drove away.  I was going at a good speed, and we were half-heartedly singing our "travel-songs", when I noticed Addy playing with her lip in the rear view mirror.  I reminded her not to put her fingers in her mouth, and then realizing her anxiety and that she was so not wanting to go but being good regardless, I asked her if she was ok.  She said a shaky "yes".

I asked her if she knew what the doctor was going to do, trying to prepare her for the usual looking in her throat and ears routine.

She nodded her head, and asked me "are they going to give me a shot?" and I told her I thought that it was too late for that.

Then she asked, "are they going to cut off my lip?" 

I about drove the car off the road.  I about cried.  This little girl had got her coat on, got into the car seat, buckled up, road twenty minutes in the back seat with no one to hold her hand, thinking the whole time that they were going to cut off her lip......

Someday when Addy is needing to be reminded of this, I plan to tell her what a brave, strong girl she was when she was six years old.  How she totally overcame her tendency to kick and scream when thinking about doctors ahead of the idea that she wanted to be good for Grandmum, who was still not looking so good or strong.

How she decided to maintain her emotions and rode along nicely when she thought they were going to cut off her upper lip.  

I didn't need to lie to myself this morning to get up, get out and get going.  I thought about Addy dutifully putting on her coat and allowing me to take her in the car when she thought she was going to be permanently maimed.

***

Our house church celebrated Passover with a Seder this past Monday.  I am becoming increasingly tired and wished I would hit the "end" button with the radiation leftovers, but haven't yet.  I considered begging off, because I start to shut down and need a "nap" - or siesta - whatever you like to call it, around 3:30pm.

But I learn so much from my grandchildren and realize that I need to get back to some of the childlike thinking they embrace.  If Chloe could be outside and make a snowman when she was feeling worse and worse with an earache, that ended up being strep the doctor thought, but if she could make herself feel good enough to not miss out on the fun of playing in the God-given-gift of SNOW!, then who am I to back out of evening activities.

I keep reminding myself that I need to "be there".  Not miss it.  Get going.  And hopefully my body that seems to not be liking the radiation fall-out, can just tag along and get over it.

Although Scott and I both agree it's probably not a good idea for me to be driving late afternoon and after....

But, if you have never done a Passover Seder before, I strongly suggest you do.   There are four glasses of wine that go with the Seder to drink during the course of the evening feast.

So I'm sitting through the reading of the Haggadah, rolling contentedly along, not falling asleep, not yawning - because of my awesome cup of coffee supplied by our gracious hosts - when suddenly we get to the third cup.  I listen and almost choke.  Immediately, tears are in my eyes.

It's me.  I'm the third cup this year.  It's me.

This is a quick googled explanation of the cups:


Many reasons are given for drinkingfour cups of wine. Here are some of them:
When promising to deliver the Jews from Egyptian slavery, G‑d used four terms to describe the redemption (Exodus 6:6-8): a) "I shall take you out..." b) "I shall rescue you..." c) "I shall redeem you..." d) "I shall bring you..."
Or this:  
Wine cups and wine (or grape juice): Everyone at the Seder has a (usually very small) cup or glass from which they drink four cups of wine. Traditionally, the four cups represent the four biblical promises of redemption: “I will bring you out from under the burdens of the Egyptians, and I will rid you from their slavery, and I will redeem you with an outstretched arm, and with great judgments. And I will take you to me for a people . . .” 
But, if you are doing this Passover Seder with one eye on the Exodus, and one eye on the last meal that Jesus shared with his disciples before His death, it takes on even  more meaning.  The third cup is what the Christian church has taken to be their communion.  (Notice, Jesus does not drink of the fourth cup.  He says, He says, that is yet to come and He will not drink of it until that day.  hmm.....) 
But I sat there in my own little isolated thoughts while reading my Haggadah along with the leader, and whammo, God says LOOK!  This is you!  
I have felt this whole journey with cancer amongst other things, has been one big magnifying glass showing me what is the equivalent to sin in our lives, my life - cancer cells.  Last year during Passover I was insanely aware that the leaven - that at Passover represents sin in our lives and needs to be sought out and removed - was a close kin to the cancer cells in my body that my doctors were diligently, harshly seeking out and trying to remove.  
Ray Vanderlaan paints a wonderful picture of how his Jewish friend does this with his own family.  To remove the leaven from their home is not just a typical cleaning day.  They hide little bits of bread in the couch cushions.  They hide it in different places, then the children are taken around and shown how important it is to rid the home of leaven, even making sure there is none hiding out under the couch cushions, under a rug, etc.  
Once the leaven is found, a rather big production is made of removing it and taking it and throwing it into the fire.  Then, there is a time to tell the children how that leaven is just like sin in our lives - it can grow and be found everywhere.  We can drop it in the furniture.  We don't even know it's there sometimes until we purposely seek it out.  
We need to diligently seek it out and remove it.  
I was all about that last year - I knew the keen comparison between what my doctors were doing to find and remove my cancer, was very strongly linked to the idea of leaven.  
Consequently, I remember that the first and second cups of wine made perfect sense to me last year long after Passover - I was taken out of the land of slavery, I was rescued.  I was brought out from under the burdens of the Egyptians.  
This year, I was smitten when the third cup was read:  I was redeemed.  Or maybe for me, better said "I am being redeemed".  It's the last cup that Jesus drank.  There is suffering attached to it.  There is the idea that the plagues of Egypt were sent to redeem the Hebrews - God brought them out.  
The Four Cups of wine used in the Pesach / Passover Seder primarily symbolize the four distinct redemptions promised by G-d to the Hebrews as told in Shemot or Exodus 6:6-7. (1) "I will take you out of Egypt", (2) "I will deliver you from Egyptian slavery", (3) "I will redeem you with a demonstration of my power", and (4) "I will acquire you as a nation". 
Or maybe this last one is the best descriptive for me, this day, this Passover.  (3) "I will redeem you with a demonstration of my power".  
There are times this next year that I know will be nail biters, that will make me cry, that will be fear-filled, and I don't pretend to have any promises from God that I am healed and all will be super good for me.  
I am learning to live with that.  
But the other night, God tapped me on the shoulder and reminded me what had happened this past year - and if I am headed for the wilderness, do not, do not, do not do as the Hebrews did - don't forget what great and awesome power God has used to save you with.  Don't forget He can and will see you though it all - no matter where the journey leads.  Don't be unbelieving like the people were when the spies came back and said the land God has given us is big and fruitful, and the people are big but we can overcome them.  Don't be fearful and live like God cannot do great and mighty things.  
***
So, of course you know, I am getting my coat on, letting myself get buckled into the car seat and even though I am wondering if my lip - or worse - is going to be cut off, I am going along for the ride, talking with God the whole way.  
Because I love Him and trust Him, and know that He has taken me out of Egypt, rescued me, and most of all redeemed me with His mighty arm.  


















Friday, March 22, 2013

The muddy pouts

I sit here and listen to my song-play-list because I read too much.  Actually, I am reading less than I ever have in my life - so it's not that I am reading too much - but more that I am reading certain subjects.  Because of the overload of information on the internet, and the overload of wrong information on the internet, I have purposely limited myself to only a few cancer websites - one of those being the Triple Negative Breast Cancer Foundation.  Today, their posting started with information about a new study, which is a rabbit hole I throw myself into freely most days, knowing the usual impact it's going to have on me.

Always, always, somewhere in the study information, is a paragraph like this:

..."The median survival for metastatic triple-negative breast cancer patients is historically nine months." ... 

I know my doctors are closely watching me this next year.  I know there is huge danger lurking about in the corners of my body cells.  I see them hiding out - hiding their Nazi sympathizer flags - just waiting for the right moment in time to unfurl them from their windows again.  I know the lovers of chaos are nearby, even though I am rejoicing in my recovery.

It's like living in a nice home two blocks away from a violent ghetto - you know one day your good body cells could easily meet up with ones that hate you and intend evil for you.

It's like living two doors down from Saddam Hussein - you can live a good life, but know the plastic-people-shredder is being used every day, and one day it may be your turn......

Sometimes, I can read through those phrases quickly.  Sometimes, like today, I have to sit and think a little, grieve a little.  I have to lean back in my chair and step out of the role.  I usually turn on my play list and turn my eyes off of the screen in front of me, and onto a God in heaven that hears me.

I think about friends that have prayed me through the worst of this valley and say to me "God has healed you - we are praying against recurrence" and I trust them to do that for me.  I think about the known medical facts and the cautions that all my doctors have given to me "to get here fast" if I think anything is amiss.

I think about the facts, the ice-cold, hard, sterile medical facts.

Then I think about a God that can do the impossible.  That has done the impossible.

These last few weeks have truly been a time of great enjoyment for me.  I am so glad that God has brought me through this journey without resentment and the other baggage you can so easily pick up - the things you can pick up that use up so much energy.  Anger.  Hurt.  Pain.  Resentment.  God has protected me from those - made a path through those as they popped up this past year - so I don't carry them now.

The first two weeks after my last radiation dose felt like I was walking in ecstasy.  It felt like I was moving about in the most beautiful garden and every sense was alive and I could not drink up enough with my eyes - the look of pure delight in my grandchildren's eyes is a field of beautiful blooms uncontested.

My ears delighted in every sound made - the voice of my son talking about our new "project"; the voice of my daughter finding her way after some difficult medical news of her own; my eldest daughter telling me the good news of a wee one's growth - it was all so musical to my ears.

The idea that I was here - here on this earth - to live in this moment, this point in time, took on enormous meaning to me.  With the word "metastatic" in front of the words of my diagnosis, there was no guarantee that I was going to be here this February to celebrate a "last day of treatment".  It didn't guarantee that all the days, weeks, months, then a year lost to legal, honest medical poisoning was going to give me the bonus of living beyond.

I remember asking God, begging God one day in November to not let me die without hair.  One would think that after eleven months of not having hair would make it not matter so much - and one would be correct.  You get used to it, it's not all that important after other news you absorb within your treatment.

But the last go around of chemo was so hard, it made me so sick, that I wasn't sure I was going to make it through.  I wasn't sure I wanted to continue.  I wasn't sure I could walk through those doors and do one more almost lethal injection of poison after the first three months of this series of chemo left me pretty close to dead.  I looked skeletal   I looked as hollow as I felt.  I couldn't think, couldn't cope, couldn't exert enough energy to move much.

I looked in the mirror, saw all of that, remembered the couple of times that I had awakened with a gasp because I was afraid that my dream of falling, my dream of breathing too little was real - I remembered waking up and taking deep cleansing breaths to remind myself that I was still alive; but that day I looked in the mirror and I asked God to not let me die without hair and eyelashes, because I wanted my husband and children to remember me alive - not skeletal.

Looking back, it was probably not my most "spiritual" prayer.  It was one that was earnest and heart felt, and it made perfect sense at the time.

***

My journey through radiation was a bit of a puzzlement to my doctors and myself - the further I got away from chemo, the more I kept feeling better and better.  Traditionally, medically, radiation is supposed to knock you down a bit.  It's supposed to make you feel fatigue, and your skin is supposed to go a little crazy because it has issues with being baked.  But instead of the downward swing - I kept feeling better.

Come to find out, part of that reason was the fact that I am on thyroid replacement meds.  During radiation they hit at least half of your thyroid or maybe most of it depending on your lymph node involvement causing it to cough a little and maybe stop working.  At best, for most people, your thyroid has to take time to readjust to radiation taking out some or most of its working apparatus.  My thyroid was "killed" several years ago - and I already rode that thyroid roller coaster through hell - the extreme highs and lows and the great need to find stable footing to rest your body function on - all that I have already been through.

And sadly, there are those around me that remember that craziness.  Literally, craziness.

Having done all that a while ago - making me the star pupil in radiation - my thyroid wasn't coughing, it wasn't shrieking, it wasn't dipping and spiking and causing all kinds of issues because it couldn't.  I didn't even have to get on the roller coaster - instead, my body could take the leisurely water ride in the inner-tube down this river named "radiation-poisoning".

My thyroid replacement pills that I have rued so many times causing all kinds of c.r.a.z.y emotions, body turmoil, clouds, fog and dust, had been adjusted multiple times - already taming the beast.

I'm the only one graduating the radiation program in my group that didn't need to have a TSH level done in a few weeks - well I just did, but it was through my endocrinologist, not my radiation doctor.  

While watching the other ladies step down a little bit each week, I have to say with a little bit of rapture, it was refreshing to not be on that train.  There were side effects - one does not escape radiation poisoning ever - but my thyroid was not invited to that party, making the party a lot more fun.

***

And please do not misunderstand - this is NOT to say I have escaped the whole radiation fallout.

The whole fatigue thing has caught up with me - I can literally fall asleep if I sit down or lie on the couch at any point in the day.  If I sit down to look at facebook - whammo - my eyes are closed, I'm asleep.  Open up email - whammo - I don't even get the first one read.  I leave a window open when I drive.....

And this is the most tremendous thing of all - it's the first time in fifteen years that I have not needed sleep meds to give me six hours of sleep at night.  So all my time online replying to emails, texting, etc, due to insomnia are actually used to well, um, sleep!

It's quite an idea my body is having a difficult time adjusting to.  And I'm having difficulty fitting correspondence and such into a day not suited to sitting.  Because apparently sitting in front of a computer improperly is contributing to my muscle and everything else damage so says my physical therapists.  I looked at facebook last night for the first time in quite a while, and I've missed a lot there friends!  I have 252 emails to weed out and some of them that I shared with Scott last night made us laugh quite a bit - I need to catch up if for no other reason than to take time to laugh and marvel each day.

And see what's on sale at Old Navy two weeks ago......

***

We did something very impromptu President's Day weekend - we went and stayed a few days with friends.  One day longer than we originally planned.

So there! sluggish brain that thinks too much and not enough about making decisions.

It was the best medicine.  Their home is calming, clean, and just comfortable.  We ate out, went to Ikea, then went to an antique mall that not even I, the great junk-store-shopper-extraordinaire could make it through - it was huge.  Like massive.  Like if I spent four months there I would still not have explored every stall, every dish, every fifty year old coffee pot.

It feels so good to get out.  It feels so good to sit in a restaurant and not have to wonder if their possible lack of good kitchen hygiene could be my ultimate undoing.

When I saw my oncologist a couple of weeks ago, she sat down beside me in one of the patient chairs and asked me how I was doing.  I leaned into her because I know that she is the one soul on this earth that has held my very life in her caring hands this past year and more, and I told her quietly, "I think the chemo is slowly leaving my body."

"I think I am on the road to recovery".

She smiled at me, and said "yes, yes you are".

***

So as I sit here a bit sedate with the "short-life-of-metastatic-triple-negative-article" information and remembering the words of my doctor this week explaining to me again why they do not want to remove my port for a good long time, I listen to my "fighter-playlist" that has been my mainstay a lot of days, and reflect some on my journey.

I am at high risk for recurrence.  I have done everything I can to not have recurrence, including two different study drugs, radiation, extra chemo, etc, etc, etc, and adding that all up makes me less likely to recur.   On the other hand, this type of cancer has a strong desire to recur - especially within the first 11 months.  So every swelling, every bump, every odd thing that happens on my body this next year is greatly examined, studied, and considered for further tests.

While I know that my body was declared "cancer free" at the end of treatment, I also know that there are errant cancer cells just waiting to bust out and wreak havoc again if given the chance.  You don't have to delve too deeply into history to see that truth in any society once war breaks out or the good, beneficial social systems break down -- there are loads of evil "cells" just waiting to burst out and take over.

Apparently, my body is akin to Germany and Japan directly after WWII - needing to tread carefully while it starts to rebuild and seek out the evils that caused such demise and smoother it out.  Smite it.  Knock it out.  No Nazi flags in post-war-Germany.

I truly believe that God has set us upon this life to "journey it" - to walk it, to start at one point and not stay there, but to get on, get walking, get involved in your journey.

That means you have to own your journey.  All of it.

One of the things about North American Christianity that has bugged me for years and years and years and years is the fact that we cannot "do suffering".  We cannot "do hardship".  We cannot walk dark valleys and scale treacherous mountains - and if we do - if we must - we don't talk about it until we are over the difficulty and can look back and smooth over the precipices, smooth over the bogs of deep muck and life-sucking-mud, smooth over the soul-questioning, soul-seeking doubts and fears and emptiness.

We don't talk about it all until we can nicely tie it all up with a pretty pink bow.  It all needs a good summarization - a "testimony of faith", a "bragging" point of almost prideful, willful "this is how I did it" - kind of sounding like you led God, not like God led you.

We don't talk about the huge unattended and sloppy manure pit that had to be cleaned out and hauled away.  We don't tell how deep the manure was in the barn and how difficult it was to get that out of each stall.  We don't talk about the nasty, deadly odors that occur along the way - none of that gets much mention.

We just point to a sweet smelling barn that flows with wonderful beds of fresh straw and the sweet aroma of hay in each feeding trough.

But because we cheat the story, because we don't tell it all, and we certainly don't tell it unless we can tie that pretty pink ribbon around it - we cheat the One leading us on this journey.

We just put nice clean smelling barns on the farm tour and neglect to tell how much work is involved in the process.

If we don't tell the story of the trenches, we cheat the One leading us in battle of the total victory.

And I don't mean you get so entrenched in the slop that you cannot take joy in the moment of awakening each morning, realizing you are still alive.  I don't mean you live negatively, with hostility and resentment.  I don't mean you live your life feeling cheated because you don't get what others have.

I do mean, we each have our own journey that God has started us on, and if we cover it with pretty ribbons and refuse to let the enormity and the horror and the wretchedness of parts of that journey to be told, then we cannot fully claim to have arrived on the other side because we have denied the fight.

It's like saying we went to war and the sleeping arrangements were fluffy, soft beds - when in reality we all pretty much know the best they might have had was sandbags, or a bunk if you were lucky.

Every story about war that I have read - whether the French and Indian War, or the battles in Iraq, all have one recurring theme - you not only suffer in wars because of fighting and bullets flying about, but you suffer because of hardship as well.  Eating and sleeping and bodily care all are part of the story - because the worse it was and the more it is told - the more we marvel at the feats accomplished, and the more we weep at the suffering.

The more honest the soldier about the truth in the trenches, the more we like and admire their stories of their journeys.

No matter the outcome of the story - if it was victory - we rejoice.  If it was defeat, we sorrow with them.  If it was horror, we circle around and hold close.  If it was difficulty, we thank God in heaven above that He kept them.

And grieve for those not able to tell their stories of their journeys.

Not so much when it comes to the North American Christians.

From what I hear, it appears we are only to tell the stories that make everyone rejoice.  And even then, if you cannot tie it all up with a bow to make it look nice - don't tell it.

Because we cannot tell how awful it was, we cannot tell how much we suffered, we cannot tell any of it and if we do, it must be tied up with a cutesy little bow that says "oh, it wasn't so bad, it was all for good", and it sounds so fake that we walk away from them and don't want to listen any longer.

We cannot say "God set us on this journey, and I don't have all the answers, but I know that I know that I know that even in the awful, even in the stench, even in the bloodiness of the battle, God was there."

Period.

I honestly don't know what Bible the pink-bow-people read.  God goes to great lengths to show us person after person after person that suffered - without any pink bows put on those stories.

Alarmingly, I hear Christian folks say that those people whose stories were laid out before us in print in the Bible - were "not equal to us".  They were "less" because most of those stories happened before the advent of the Messiah.

To me, I am left unsettled in my soul after hearing such things and I am uncomfortable before God until I beg Him to see us in our stupidity in not knowing our Scriptures well enough to respect these  ones that had their lives laid bare for all to read - the good and the bad.  And the ugly.  

They suffered, and God said their faith and their obedience was enough.

Sometimes, stories of our journeys have silver linings.  Sometimes, those need to be told to encourage faith and hope and to revive weary souls.

Sometimes, we don't know the whys of our journeys, and yet those stories need to be told as well.  Many, many, many crisis of faith are not known because the sufferers feel they have to be suffered alone.

Shame on us.  Shame on us for being fake.  For living falsely before God and the world.  For misrepresenting a God urging us on our journey, and when we don't wish it, or when we want to not go, we just get out some pretty ribbons to dress it all up.

***

One might surmise from all of this that I am a bit grumpy.  One would be surmising correctly.  I want to be doing things I can't do yet.  I want to be feeling better than I am now.  Scott keeps reminding me that it will take time - and I'm not sure I want to give that time to a slow recovery in some areas.

I'm grumpy because when I went to Walmart this week, people stared.  I know it's my choice to wear a wig or not, but so help me, Columbus folks don't stare.  I'm grumpy because I want more energy to do things after 3pm in the afternoon.  I'm grumpy because I want my brain to be able to do some mental gymnastics.  I'm grumpy because I have to stare a long time at spreadsheets to understand them now.

I used to create them - now it's not easy to read them.

After I made it through the bogs, the deep valleys, the fear the hurt the pain - one would think the downhill slope would be the easiest of all.  And it is - except for little comments from doctors that remind me I am still under their care for a good long while yet.  Except for the cording in my arm that limits me no matter how hard I work it.  Except for the lymphedema - the swelling - that I did everything to avoid - everything - finally hit when I worked a little outside one day.

They said not to do that again for a while.... They said anything can make it happen and nothing can make it happen.  They said to remove all allergens and to be extra careful around knives and not to cut myself on anything.

They said radiation provokes it, making it probably the reason it is bothering me now.....

I don't want this now.  I've got a basement to clean out.  I've got grandkids to lift.  I've  got things to type at a keyboard.

God woke me up on a few scriptures over and over while I have my online Bible whispering to me at night.  One story was the story of Elijah after he had called down fire and rain from heaven - all that fanfare and glory flying in the face of the evil king and queen.

The next day he runs for his very life in fear.

The other story that God tapped me on the shoulder making sure I heard it a few times was Hezekiah. He was sick in bed and begged God for his life.  God had mercy on him and gave him fifteen more years.  Then, then, Hezekiah accepted the envoys from the king of Babylon and showed them all that the kingdom owned.  All of it.

The Bible says the ending of his story like this:


16 Then Isaiah said to Hezekiah, “Hear the word of the Lord: 17 The time will surely come when everything in your palace, and all that your predecessors have stored up until this day, will be carried off to Babylon. Nothing will be left, says the Lord. 18 And some of your descendants, your own flesh and blood who will be born to you, will be taken away, and they will become eunuchs in the palace of the king of Babylon.”
19 “The word of the Lord you have spoken is good,” Hezekiah replied. For he thought, “Will there not be peace and security in my lifetime?”


So, I have determined in my mind that the easiest time to fall into great fear and great sin is after the euphoria of triumph.  And I think on it every time when I, like Elijah, want to go get my running shoes.

I have just walked out of a valley that some did not.  I have just been given more than I was supposed to have.  And I get grumpy over the little things??!!  I want to run away like Elijah and hide out for a while??!!

And I don't even, don't even, want to think like Hezekiah did after God did a great work in him.

So, I pray God uses me for good.  I pray that my disappointments and fear and feeling down after a great battle do not lead me into sin.  Do not lead me into not caring.  Do not lead me into the same old, same old.

Because He just led me by the hand through something most don't survive.

I need to work at the patience.  At the slugging of the boots in the mud at this moment.  It's not a soul sucking mud - it's just the irritation of it all.

I have learned so much.  And most important of all, is that God wants the whole story.  The gore, the yuck, the euphoria, the ecstasy and above all else, the honesty of it all.

So along with all the other prayers pouring forth out of my soul trapped under impatient, muddy moods, I pray that I don't wait to talk about it all until I can tie it all up with a pretty pink bow on it.

As much as I have avoided it, my body is pouting.  And it's not pretty at all.....