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.  

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.....

Grieving

I keep pinching myself and smiling, then just sink down into my couch, feeling how good it is to be home.  Being quite a vagabond and living out of a suitcase the last five-plus weeks makes being home all that much better.

Even though my physical therapist scolded me for it this week, it's great to sit in front of my computer again - I am hopelessly horrible at writing on small devices. I need to see the "whole sheet of paper" in front of me before I press "send".  Obviously.  Those of you that have endured my poor attempts at "snippet-replies" know what I mean here.

I am swallowing food better.  My doctor told me that they had "kissed" my trachea and esophagus during radiation, and that it would heal up, and it is.  Faster than they thought.  My toenail is growing back, and the other toenails that had threatened to leave as well, seemed to have decided to stay put for a bit longer.  My skin is looking better already.  Feeling better already.

My ribs on the other hand, have started a coup.  Part of my rib cage, mostly the left side and back, feel like I have been kicked by a horse.  Certain movements like coughing and sneezing and getting up out of a chair can kind of make me stop breathing.  My deep breathing exercises that my physical therapists gave me are rather difficult all of a sudden.

I called my doctor's office and talked to the nurse practitioner who smiled at my description and said "we wondered how long it would take to hit you, Karen.  This is normal, especially after five weeks of radiation."  She gave it some correct terminology, and what I repeated back to her was "so,,,, you are telling me my chest muscles are cooked and my ribs and cartilage are barbecued - just so I am understanding this correctly", and she said "well, kind of, yes".

While I am smiling, and glad all over for the end of my treatment, for the ability to be *home*, for the fact that Scott and I both are feeling better than we have for a long time; even with this latest symptom arising, bringing with it fatigue - for the first time in fifteen years I can sleep at night without the help of drugs - heck I can even sleep during the day now without any prompting or help whatsoever - but despite all the little things still hanging around - we are smiling.

If we were dogs, we would be wagging our tails so much our whole bodies would be swinging.

Even so, daily, I still do a little grieving exercise that a good counselor taught me a long, long time ago.

In the front and center of my mind, I remember that I met a lot of people on this journey that aren't smiling today.  Can't smile today.  I know there are some still in the fight.  I know there are some that are no longer in the fight and have passed on.

My first week of chemo was at the James Cancer Center main campus, four days a week for five weeks as I was in the first phase of a study drug trial.  Some days I got a room to myself, other days I was in a small curtained stall waiting for drugs and blood pulls.

While waiting in those stalls, I came to a cold realization while listening to other's intake and evaluations - that some in that "Phase One" department were doing the new drugs for no other reason than to help out science.  Their cancers had overtaken them, won the battle, and yet these people were doing the drug studies so the lab and doctors could see what these new drugs did to active cancer cells.

They even went a step further - Phase One is mostly about determining "the highest dose tolerable" - that's not a field of daisies you walk through in that wing of the hospital.  They were basically being overdosed, then underdosed, then overdosed again to see how their liver reacted.  To see how their heart reacted.  To see how their digestive tract reacted.

Sometimes, it felt like you were four steps from a deep-pitted gulag - some type of torture chamber - only your cell was sterile and clean, the inmates friendly, and your caretakers cheerful and kind.

If you get cancer in the next decade, you owe a great deal of thanks to these people - they literally suffered much at the end of their lives so a doctor could know what dose to give you of their new treatment.

I had a hard time grasping their courage - cancer treatments have not changed a whole lot in some ways for decades and decades - and a lot of that is due to the fact that there just aren't as many people willing to become human guinea pigs.  I would listen to these intakes and realize what they were doing, and then try to get a good look at these people when they got up to leave - I didn't know how they could choose to not take the last couple of months or weeks of their lives to relax a little, get off of chemo, and feel a little better for a bit.

Some were sicker than sick.  And yet they came back day after day, week after week.  I remember listening to one man give his last evaluation - you couldn't help but hear it all being just twenty four inches away with a mere piece of cloth between you.  But his study drug coordinator went over his basics, they hugged and chatted, then she instructed him to keep calling her the next couple of weeks.

That was all he had.

I remember these people that I barely knew but was suddenly connected to deeply, and I grieve.  I was there in that group with a different outcome, for a different reason.  I was grasping at a hope for myself.

They were wanting their lives to count for others.

It's all still overwhelming when I think on it and remember them.

And also, the last two weeks, I grieve another grief as well......

***

When my children were young I was faced with some horrible information.  Horrible for others concerned, so I had difficulty understanding my reaction.  I knew I was angry and hurt, I knew I needed to protect and shield and help the ones involved, yet I cried in the shower every morning so others couldn't hear me.  I would take long walks to scream at heaven, and cry again.

I didn't understand my reaction - I was not the one who had been horribly hurt, horribly scarred, horribly had their hearts cut.  I knew I was dealing with a blatant betrayal by someone I thought loved me, but knew by far it was not the worst suffering I was witnessing.

I went to a counselor, a really good counselor, who told me what was happening - even though I was not the one who had been hurt and assaulted - I was grieving.

I told him "nobody has died, I was not the one wounded, what do you mean?"

He explained that many life events cause us to grieve and if we do not handle it properly, it rules us for the rest of our life.  We misplace anger for the grieving and dump it all over others.  We make it into a lot of things it should not, can not be.  I instantly caught the idea, knew what he was saying was truth.  Memories of folks around me that had never properly grieved their pains in their lives instantly came to mind and finally made sense.

Realizing that, I asked him how long it sits on you.  How long is your soul crying while you are living your life?  How long does your spirit weep when you cannot?

He said there was no time limit.

But, he gave me a tool to use, an instrument to help me walk through it.

He had me envision a door, then a room and a comfortable chair to sit down in.  He told me to open that heavy, solid door.  He told me to walk into that safe-room and sit down.  Then he told me to weep and grieve.  When my spirit and soul felt cleansed and spent, I was to get up, leave the room and close the door.

It was amazing.  I asked him if it was all "fixed".

He told me no, that you do that daily.  Really?  How long?

Until you don't need to open that door any longer.

He gave me one more most important caveat - there was one holding the door open for me, then following me in and catching my tears.  He told me that Jesus was there for every step I would take in this grieving process.  What's more - the Bible said he even captured our tears.

My tears were measured and saved.

That was a little different than the information I had been given previously - good solid people don't cry.  You don't grieve.  It shows weakness.  It shows an inability to look at life on the bright side.  It shows someone just feeling sorry for themselves.

All that was debunked and thrown out.  It's mostly spewed by those not knowing their Scriptures very well.

Putting perimeters around my grieving, yet forcing myself, allowing myself, maybe even gifting myself with the ability to grieve, unloaded my life.  While I would think about it all during the day, now knowing that it was a big issue, and that my body, my soul, my spirit were reacting to it and needed a safe place to go to grieve, changed my life.  I could put it on the shelf during the day, not because I was doing the classic "christian" thing - pretending all was well, everything was ok - but I could put it on the shelf during the day because I knew that there would be a proper time to take it off the shelf, explore it, weep over it, mourn it, then eventually put it back.

It has worked for a lot of years, for a lot of griefs.  Thank you Ken Jacobs.  I think because I learned to grieve when I was thirty, I was able to deal with cancer at fifty.

Because he taught me how to recognize grief, then grieve properly, I can laugh while getting punishing chemicals pumped into my body.  I can enjoy life's sweet moments and not feel like I should not because all is not well.  There is a time and place for my grieving, and a time and place to love, and laugh, and live as well.

***

So while we are celebrating the end of my treatment this week, we are also grieving as only mums and pops can do over their grown children.

Over three years ago, Heidi had a tumor removed from her brain.  While the surgery was a success, it left her fighting a daily battle with many and sneaky auto-immune disorders.  Her brain was saved from the invader, but her body could not react nor respond to that human-scalpel-invasion properly.  Her body - even though she has done everything to make it get well again - has gone a little crazy.  Having dealt with auto-immune disorders myself, I know the daily battle.  I know the icky feeling when realizing your greatest enemy is within you.  It pops out in varied and nasty forms - MS, Crone's Disease, rheumatoid arthritis, or my body's choice of options eventually - Grave's.

There are hundreds of ways your body can go auto-immune crazy and try to do you in.  I talked one day with an EKG technician who had done lots of ultrasounds and body scans in his years within the medical field and he felt that "they" would find the cure to cancer, when they found the cure to auto-immune.  I think he might be right.

But Heidi has dealt with this cauldron of crappy symptoms, diagnosis, issues and pain for over three years.  It's a medical rabbit hole you hope to never have to go down.  It's exasperating to doctors, more-so to the patient.

She called me over two weeks ago and told me that she had blurry vision in her one eye.  I had to sit down.  It felt so much like the phone call we had received when she called to tell us about her tumor.  My blood went cold.

She went to the emergency room at OSU and waited most of the day for an MRI and lumbar punch.

I went down and sat with her - complete with my mask on - while Wes went home to tuck two scared little girls into bed.

While I waited they took her up for the MRI.  Then the doctor came in at 9:45pm and said he was ready to do the lumbar punch.  Since he looked all of twenty years old, I respectfully asked him if he ever did one under ultrasound, and he replied "no, don't need it"....

His first attempt ended up with Heidi's heart rate plummeting to 34, her blood pressure not registering, and her skin became so clammy her sheets were wet after they laid her back down.  I asked him if she could be having a reaction to the lidocaine, and he said no, and when Heidi kept murmuring "I don't want this", he stopped and left the ER stall.  He had punched the lidocaine so fast that she had a goose egg on her back.

I didn't feel good about it at all, called Wes to come back in to allow him to make the call.  The head nurse came in twice and told her "she did not have to do this tonight".  That kind of caught my ear but the doctor came back in close to midnight and coaxed her into doing it again - telling her she could lay on her side this time.

I stood towards the end of the bed, watching.  After scrubbing her, he started, and inserted it into her spine a couple of times.  Then I started counting.  At the tenth punch, I wanted to yell "STOP!!"  At the fifteenth punch, I had to squat down close to the floor because I was becoming queasy myself.

I know you can't punch a vein too many times, and had no idea what this was doing to a spinal cord.

He finally got spinal fluid at punch number 19.  Your read that right.  I counted at least nineteen punches into her spine before he found spinal fluid.

When your kids are adults, it gets no easier watching this type of procedure.  I looked away so the doctor would not see me glaring at his pompous ass.  I made a joke so Heidi would not get scared if she saw me angry.

But the spinal tap showed that it was not MS.  Everyone in the small ER room was enormously relieved and ready to forgive a doctor that could not admit he could not do what he had done easily many times.....

The next morning I called Heidi at her specialist's office two buildings down from my treatment center and asked her if she wanted me to run her some Starbucks as she had been instructed to drink caffeine.  I had not been there for more than three minutes when they were called in for the final consult with her doctor.  They invited me to come along.

I went in, sat down, and looked at the MRI eye scans on his multiple screens.  I tried really, really hard to not cry.  I tried really, really hard to hold my emotions off of my face.  I tried really, really hard to not look at anyone.  I don't know a lot about eye scans, but I do know that they should look the same for both eyes.  One looked like it had a clove of garlic behind it.  I also had an inkling of what her prognosis might be and what that hideous looking inflammation meant.

She had lost her sight in her right eye.

Heidi held it together remarkably well.  She asked all the right questions.  Even thanked her specialist and his fellow.

I can be remarkably strong when my kids are involved.  I went down the elevator with them and followed their lead on how the mood of the moment should go.  It was light.  Then we sat down to discuss lunch options, and Heidi started to cry.  She realized immediately that not only had she lost half of her eyesight, but she could possibly lose the rest if this happens again.

I had wanted to ask the doctor that question, but couldn't, not knowing if they realized that or not yet.

I'm grieving over Heidi.  We are grieving over Heidi.  Scott will tell me it's going to be fine, then puts his head down to cover a tear on his face.  We hate that she has to go through this.

Losing your sight in one eye is not so easy.  Driving needs to be relearned.  It causes pain and strain.  It's scary.

But even worse, living with the knowledge that your body could once again turn on you, and you could lose the vision in your other eye as well, is a journey I do not wish for anyone.

Please God, not my Heidi.  Please God.

I thought about all the struggles she has already walked through.  All of the fear.  All of the pain.

I can't, don't, want to think about her having to go through yet another difficult, tortuous life event. I can't bear to hear people say things that cut to your soul - good meaning people that say things that have been said in the church for years - but that cut to your very soul when you are the one on the receiving end of such hurtful words.  Time after time.

"You'll get over it."  Really?  "Let go and let God."  It's just not good reasoning folks - if that were true in instances such as this, you realize quickly that you just did "let God" - and look what happened....  "there's other things that are worse".  Really?  Why, why, why do people of God feel the need to minimize every single pain?  Just for the record, Jesus never did.  Blind?  He healed them.  He didn't tell them they should not worry because they could be blind and deaf.  He didn't tell the paralytics they could be worse - they could be dead.

He never for a minute told me I could be one of the folks in that Phase One wing of the hospital that knew they had no hope, and therefore I should not grieve my own disease.

He never minimized pain nor grief.  In fact, He held the people of Israel accountable for the hurt and grief they had caused the prophets sent to them.

One of the rabbis I listen to teaches that Jesus' ministry was all about the hurting, the downtrodden, the people put on the fringes by the people inside the temple by their wrong ideas and flippant responses.

And yet we still do that very thing.

I don't know what to say to her other than "I love you".  "I wish this had not happened to you".  "I hate this".  It sucks.  There is not a whole lot of good about it.  I'm not going to hand her a list and tell her how her life is going to be gloriously enriched by this.  It might, but that doesn't make it ever easy nor make it less painful.

I do tell her what I learned long ago - I tell her to grieve it.

If my kids say at the end of my life that they learned nothing else from me than to "be real", to be true, to live honestly and to love and trust a God in heaven that we can never fully understand, then I will feel like my life did some good on this earth.

And to the suffering, those suffering anything, I simply say "Grieve it".  And as you grieve it, remember that there is One that loves to be invited into your room of grieving to experience it with you.

And never forget that for whatever reason, He captures your tears.

I don't know why, I just know that I trust the One who said it.

***

I stayed with Heidi the last week and a half of my radiation treatments.  I drove Addy to school in the morning - which was such a joy - then continued on to my treatments.  Millie went with me sometimes.

One day she put on her new dress that she received as a gift for Christmas that has a matching dress for her doll.  If you don't know Millie-bean, know that this is most uncommon.  She prefers staying in her footed pajamas all day if possible.

She told me she wanted to "be adorable" for the ladies at my treatment center.  They were so incredibly kind to her.  One of the volunteers took her for a walk to meet each person that worked there, and as they chatted most of them learned about the incredible and extreme care Millie puts into being a "doll-mommy".

She loved going with me, but I don't think she will understand how she affects the lives of others with her obvious love of life; her joy at being able to play and explore and learn; her absolute trust of others to listen to her and respond to her world.

I don't have a lot of answers, but I know that God gives us joy on the most difficult of journeys, and somehow that joy is so many times wrapped up with children and their sincere and simplistic view of life.  And their total trust that every adult in their life has their best interest at heart, and every adult will help them and love them and care for them properly.

So in the grieving is joy, and in the joy grieving.  God promised us deep and unfathomable mysteries, of which I witness more than I even knew.

I pray my eyes stay opened to heaven above, not what the worldly church teaches about heaven.

And I thank God that He sent me one to teach me some of the fundamentals of heaven - how to grieve, and how to live with joyful moments in the midst of it all.

He drove me home.

I met with my radiologist oncologist Dr. White, and her fellow Dr. W. on Wednesday morning after my treatment.  I sat in her exam room and waited and thought about a lot of things.  I thought this would probably be my last doctor's visit for cancer treatment.  I have plenty of appointments lined up in the next few months - like just getting to these is going to be a full time job - but this was possibly going to be my last appointment with an oncologist while in treatment.

I thought about my first visit to the Stephanie Spielman Center, and what a long day of appointments it had been - I had met with two surgeons and two oncologists that day.  We were there from 8am to 6:30pm.  But even though it had been the most grueling of days, I remembered well how the doctors at this place could hand you the most devastating news, and yet send you out the door smiling with a string of hope on your heart.

I remembered being able to follow the doctor's information mostly and how words hit me like "metastatic"; "stage 3"; "a hopeful study drug"; "ten years ago, this diagnosis had little hope".... they all fell on me like a ton of bricks.

I thought *these days* you got breast cancer, got treatment, and lived happily ever after.  I had not heard the words "triple negative" together in a sentence my whole life, and now suddenly, it was my whole life.  

When doctors say the words "metastatic-triple-negative" together in a sentence, they sit on a stool directly in front of you, knee to knee, looking at you full on in the face, eye to eye.  The female oncologists take hold of your hand.

They know the words that are coming out of their mouths will affect the person in front of them for the rest of their life.  Their eyes do not look away as they say the painful words nor when they are done speaking.  Their steadfast eyes make you trust them even when you know you were just pushed over a deep, deep treacherous ravine by their words.

I knew cancer was serious, I knew it would be hard, but I didn't know I was in for the fight of my life.  I didn't know how big the odds were against me.   Even if I didn't know this at the beginning of my appointment that day fourteen months ago, I know enough about the medical field to know if your first appointment with a doctor takes over two and a half hours, it's more than the common cold we are talking here.....

I thought about all of that while I waited for Dr. White and her red headed fellow.

And not for the first time in that large complex full of lots of people with a radiation wing, diagnostic scan wing, lab wing, ekg, chemo floor, surgeons offices, physical therapy wing, a half floor dedicated to mammograms and ultrasounds - within that whole complex I had wandered from room to room, wing to wing the past year hearing both bad news and good news; and when Dr. White walked in, her words once again, made my eyes swim with tears.

After the appointment I went back to the patient waiting room, changed quickly, said hurried good byes to my lady friends and barely made it to the car.  I opened the car door, got in, sat down - and as I have so many times within the many nooks and crannies of the half mile vicinity of that large building - I wept.

I sobbed.  And sobbed.  And cried.  And cried.  I could not stop.  Her words had been too powerful, too filled with meaning, too much poured onto me in just one phrase to allow me to keep my emotions in control.

Once again, one simple sentence changed my life.

When she walked into the exam room she simply said "you only have one more treatment!!"

And with that statement, the dam that held such deep troubled waters behind it, that had waited so long, broke.  That huge body of water that had swirled and stormed and wickedly threatened to overtake me, but had recently become still and deep, that dam - broke.  

I could not stop the flood of emotion and tears.

I could not stop the flood of memories that immediately jumped before my eyes - all the pain, all the tears, all the hurt and body bruising, all the times I could barely crawl out of bed during my last chemo go around, or all the times I could not sleep for days on end due to steroids with my first chemo go around; all the times I was refused treatment because my bone marrow and blood cells could not recover and I would try to get ready to go home, then be overcome with the meaning of another missed treatment and sit on the side of my bed and weep and weep because I could not control my emotions when dealing with low blood counts even if I wanted to, and suddenly within me my soul found a purity in weeping when it needed to weep for the first time in my life.

Before my eyes, I saw all the nurses who had held my hand, hugged me, comforted me, filled me with information and facts, and told me again and again how many *metastatic-cancer* patients with this aggressive triple negative cancer had missed treatments as well, and were still alive.

They didn't say how long they were alive, and I never asked.  I just took it for what it was - hope.

My brain could not stop that parade of events.  It all marched before me like a vision.

I remembered all the lonely times the past fourteen months I stood in my dining room on the treadmill friends had loaned us, lifted my hands before a holy God, with tears on my face - and worshiped - because there was nothing left to do, no prayer left to say, no intervention not begged.

I remembered the nights I awakened to find Scott leaning over me with his hands on me, crying, praying, begging our God for deliverance, because the doctors words had been too hard that day on our ears.

I remembered how fragmented my brain became, and how difficult it was to think.  And to think and then to speak intelligently for months and months and months.  I said the wrong things, laughed at the wrong things, cried over crazy things, all because they were scorching the nerve endings deep inside my cranium.

I remembered how difficult it was suddenly to walk easily with neuropathy, and how I had to plan my footfalls at times so I would not do further injury to already burning, painful nerve endings.

I remembered the painful digestive track, the "grow two sizes in two hours" bloating.  The difficulty of eating.  I counted calories for the first time in my life to maintain weight, not to lose it.    I remembered how fragile my once strong bones and teeth felt, and how I thought one good fall could break them all.  

I sat there in the midst of this flood, in the driver seat of my car, and continually said thanks to a God that had walked this journey with me.  A God Who had held me and kept me and covered me with His wings.  I said thanks to a God who had awakened my soul from the deep, and allowed me to see Him, His corners of His wings that bring healing.  I sat there in that car, and God sat with me, helping me remember the suffering, the hurt, the pain, and over all that was His covering.

It didn't make it hurt any less, but it uncovered a part of me long ago put to sleep by harsh life events.  His wings touched my soul and my soul awakened and bloomed all over within, covering pain over pain, hurt over hurt.

I remembered the first appointment, my first day shortly after 8:30am, without a complete diagnosis, having my surgeon that I would come to love and greatly respect, stand in front of me with his arms crossed and demand - after a 12 minute explanation - that I tell him my choice of options he had just presented to me.  He prodded me to make a hasty decision as to what I would choose for his part in all of my meandering treatment.

I was confused, angry, scared, so scared, and I remember leaning back - almost being gently pushed back - on that cold exam table and feeling supported.  There was nothing behind me on that table.

Then looking up, I saw what I immediately knew to be the wings of God over that cold lonely exam room ceiling.

The ceiling was covered with the wings of God.  White, feathery, soft wings.  I saw them - it was not an illusion, not a mind trick, not a departure from reality - they were placed there by a God that had heard my cry, my whimper, my desperate whisper for help - and the universe ripped apart and I saw His wings covering that room.

I thought on the warm whiteness of those wings again while I sat there in that Chevrolet weeping, wiping my nose on my sleeves because I had run out of a mountain of stored Starbucks napkins, and there was only one person to call - I called Scott.  He didn't pick up his cell phone, so I called his classroom number.  He answered concerned, because I only call that number, interrupt his class, for emergencies.

I couldn't talk.  He wanted to know if I was ok.  I said, yes, "I -sob- am doing -sob- really -sob- good".  He said "I'm coming down - what did your doctor say?"

I finally choked out the words - "She said I'm done.  I'm done, Scott.  It is finished.  I only have one more treatment.  I'm done".  And then I laughed.  And then I sobbed.

He didn't say anything for a moment, couldn't say anything for a moment, then said "I know, sweets, I know.  You're done."

He has been my Jesus daily here on this earth.  He has cared for me, comforted me, prodded me, helped me.  He has used up his sick days, his health, to take care of me.  He is the closest thing to mirror God that I have met on this earth.

He knew what this moment was - our journey to the end of hell and back - our journey through the valley of the shadow of death - for this moment - was finished.

***

I have wandered this journey without knowing a lot of things.  I didn't know that at the end of the treatment you go out to the waiting area and ring a bell three times after your lead radiation expert reads the words:

Ring this bell

Three times well

Its toll to clearly say,

 

My treatment's done

This course is run

And I am on my way!

One of my new radiation friends, Joline, printed off the information and brought it to me the next day when I told her I had not heard of this tradition before.  I briefly mentioned it to Scott, when I was home one weekend and told him that Joline was a little disappointed that her family could not be there for her bell ringing.  

I knew he didn't have any extra sick days to take so I didn't even hint, not a hint, that he should be there.  I told Heidi about it, and told her she could come if she wanted as Millie-bean has gone along with me to a few treatments, met all the good, happy, kind ladies and loved them as well.

So Heidi, her two daughters Addy and Millie-bean and I walk into the radiation wing Thursday morning.  Addy had talked non-stop about missing school so she could watch Grandmum ring the bell.  She packed a big lunchbox full of snacks thinking it might take most of the day.  I told her a few times that she would not be waiting long, but she and Millie also packed a backpack full of dolls and outfits for entertainment.  

As we walked in, I was already crying.  Millie walked up to the ladies and showed them her baby in her new outfit, they were smiling and loving on her again, then behind us the doors opened again and a whole crowd of people that I love most in the world walked in - Chloe and Zoe and Scotty and Leila; Kristi, and my dear, dear Scott that had secretly planned this all with the kids.  

They were all there.  

And I cried some more.  The relief, the love, the happiness -- all happened at once in that place of hope, that place that I had wandered in for so long.  The hugs and laughter and happiness could be heard all over the building.  The squeals of delight from four small girls was infectious.  The other folks in the waiting room all smiled and laughed.  Chloe hugged me and hugged me and yelled "Grandmum - you're treatments are all done!!"  Zoe just hugged and hugged and told me she was "so happy".  Addy and Millie jumped and laughed and yelled.  

The two front ladies that I have come to know were pleasantly surprised at how much the young girls knew of my treatment and how cognizant they all were for this moment.  

I know.  I know how blessed I am to have this family.  I know how blessed I am to have had all of them care for me and love me so this past year.  They have all done so much to help and lesson our burden and care and love, and I am so blessed.  I know that.  

Then that whole blessed group waited a short time while I went in for. my. last. treatment.  

In the patient waiting room I cried with Joline a little - she had waited on me to be there for my last day.  I cried with my radiation people - I told them I had been "doing this place" for a long time, and that I could never, ever, repay them for the good they had done for me.  I could never repay them for the encouragement, the happiness, the fun, the healing.  

I hugged them all - then they gave me gifts only a radiation patient would treasure - my 'protective-scar-blob-thing' and my chin strap.  We had the "ceremonially throwing away of the chin strap".  It's not the favorite part of treatment, but keeps your body not moving while you get the radiation.  It was kind of like throwing away that horrid maternity dress you were stuck wearing the last two months of pregnancy because it was the only thing that fit.  You just were glad you had it when you needed it, but ever so glad to see it go.  

We laughed one more time over some private jokes then I told them they all had to come out and "be Gerwigged" - and they gladly stood out there with us all, participated and watched, applauding loudly while I rang the bell.  

My family was over the top happy.  I was over the top happy.  We all knew it isn't a perfect life, but sometimes you have some perfect moments, and this was one of them.  

I will cherish it forever. 

We went to lunch later, and celebrated over some good appetizers, good food, and good desserts.  

Four little girls and I declared it "THE BEST DAY EVAH!!"  

And it was.  

***

Kristi had to go back to work, and the rest of us ended up back at Heidi's house.  I was surprised when Scott asked our son to drive his car home for him.  I thought it a bit odd and commented that the alone driver with two kids might not want to share their driving partner.  Scott turned to me and told me "I drove you to your first appointment, and I am going to drive you home, sweets".  

We held hands most of the way, with the radio off most of the way, and mostly just smiled.  I cried a little more, then we smiled some more.  Then we would talk about the funny things the girls had said that day, and laugh, then sit and be quiet and smile again.  

Amidst the flood of events, God has walked us through the best and worst.  We don't know what the future holds, but each day I get up and say "Blessed art thou Lord God King of the universe, that gives me another breath of life, another day to live."  And live it, I plan to do.  

It's not a perfect life, but there are some perfect moments.  

And he drove me home.  

Feeling good, feeling good.

Everyone, with deep concern, keeps asking me how radiation is going.  I can't help myself with my answer - "it's all one big party!!"

Honestly.  The folks at the Stephanie Spielman Center could not have set my radiation time at a better moment in time for me - I have met such wonderful women, made friends, and we laugh like hyenas over everything.  Getting undressed in front of half of Columbus for however long your treatment has been?  Laughter.  Getting fitted for bras?  Laughter.  Showing each other our hair growth?  Laughter.  We talk about this spring and summer and what everyone plans to do.  You might find it difficult to meet a roomful of women more excited about spring this year anywhere else in the continental United States....  We've exchanged names, phone numbers, email addresses, and hope to keep in contact.

We have all come through the valley of the shadow of death, and we could not be happier about it all.  And even though I am starting to feel the effects of the radiation finally, the fatigue and skin sensitivity, it still all seems like I am going on a picnic at the end of a long, long, journey.

I know there are those eyeballing the whole radiation route, knowing it's in their near future, and my only advice is to not worry about choosing your time, but instead choose your waiting room mates!!  I mean, really.  It's been a joy.  All through chemo I didn't get to talk to other fellow sufferers.  The chemo setup at the Stephanie Speilman Center is that the first 40 women to show up get beds, in single rooms.  It's quite nice and setup to accommodate your travel mates and all, and there is a nice feeling knowing all of your symptoms are not heard all over the chemo ward like they were at OSU-Phase One Study Drug ward when I started, but you don't see the same women each week, nor do you really have a chance to talk with them at length.  And that's ok, you need to be able to discuss in depth with your chemo nurses what has happened and what will happen...... And honestly, you don't feel all that much like talking.  And even more honestly, you don't feel all that much like hearing other's stories - you focus a lot on getting through your treatment, because that's about all the energy you have most days.

But there is no being apart from other "fellow-journeyers" in radiation.  We sit together and talk, and laugh and plan things to do with our lives....  That seems to be all the rage in that room, after not knowing for a while if you had plans to make... And can I say, they are so dangone good at accommodating patients. Running early?  No problem.  Running late?  Don't stress, we'll get you in.  All it means, is that you meet five more women going through the same thing.

***

I do have to admit I have developed a good case of "treatment envy".  Again, the last several weeks /months, I have heard the word *metastatic* used in a sentence with my name attached a few too many times.  That word burns my ears every time I hear it.

While talking to these ladies I ask how long they have been in treatment - they respond with "May".  "July".  "September".  And I have to work really hard to not have my head swing around and say "WHAT???!!!"  By far, with the women I have met, I get the award for the longest time spent at OSU/JAMES CANCER/STEPHANIE SPIELMAN CENTER.  That's a line I didn't want to be standing in.....

But apparently, I hold an advantage in that I don't have to work while going through this like some do.  That means I don't have to wear some necessary clothing pieces that the work-world kind of demands.... Also, I can wear whatever clothes I want to wear however I want to wear them - like turning a nice soft 100% cotton long sleeve t-shirt wrong-side-out so the seams don't irritate my skin.  While talking to the other ladies, as my fatigue has started, I don't have three teenagers at home demanding time, effort, and everything that goes with keeping up with children.  I can go to bed at 7pm, and no one cares.

So even though I have talked with God some about the length of my treatment, and knowing it could have been shorter if I had demanded an ultrasound with my first lump, I'm ok.  And maybe even have it easier with radiation than some of the ladies do that have to wear things and do things that cause a lot of skin irritation.

If the damnable word *metastatic* would just go away, I would be feeling even better.

All that to explain my next adventure:  I am in a new study.  This one is not the same as my last study drug - that study was a drug my own oncologist had developed, of which I was in the very first stage of testing - making us closely tied to each other for life, both wanting and needing good outcomes.

The new study drug is a world-wide, double-blind study.  Meaning that neither the patient nor my doctor knows if I am getting the drug or a placebo.  After meeting with my study coordinator last week, we are leaning towards the fact that I am getting the real drug, due to my side-effects.

Apparently, only God and a doctor somewhere in a faraway land, knows for sure.

I told my doctor when she was encouraging me to jump into this study in December - because it would enhance my chances of not "recurring" even more - that even though my brain has been quite uniquely on a beach in never, never land, savoring it's last few months of not having to do like actual math or problem solving or anything, I told her that I had added up all my chances I had been hearing over the past 13 months of treatment and  I was now standing at 158% for non-recurrence.  

I raised my eyebrow at her while she laughed and told her my brain was telling me I was in good standing suddenly. And that I was banking on those odds.  Because those are nowheres near the national averages for this *disease*.

But I will take what I can get, and for now, know that I feel better than I have in a very long, long time.

And oddly, just a sidebar, this time my hair is growing in mostly black...... Last summer, it grew in almost all white.  Go figure.

***

God and I talk a lot on these long drives.  We talk a lot about suffering and how to stay on the journey and how to find the gold in it all.  He reminds me that His people have suffered immeasurably from the beginning of time, and more so, His own son suffered a shameful death, all under His care.

We in North America, especially those sitting in pews, don't like to discuss suffering.  We like to put labels on it like "complaining".  Or "not trusting enough".  Or the best one I have heard to date "just don't think about it".  Which I found kind of difficult this last chemo blast go around.  When one lies in bed for several days at a time, you find a little difficulty in ignoring it all.

And yet, God keeps pointing out to me time after time after time after time, while I listen to the Bible in big huge chunks because that's the way my brain is rolling now, that His book is full of suffering.  And full of how those that suffered, dealt with it all.

I can tell you they didn't ignore it.  They didn't label it.  They didn't think they were not trusting God enough - in fact most times it was the opposite - never did they trust God more.

If you have time, along with the verbal Bible, this is my night time buddy this last week - the last ten minutes rip me up every time.....    It might be better titled "What to Think of Suffering"....

http://www.followtherabbi.com/guide/detail/corination

***

I wrote all of this before I had a phone call yesterday.  My heart is heavy with concern for one that I hold dearer than life itself.  I ask you to pray.

And everyone is asking for an update on Scott - he needs healing and prayer as well.  His new doctor at the Cleveland Clinic says he should have had the procedure, when his other doctor sent him home.....   Plus, we are dealing with some huge bills with it all, and please just pray that God can work it all out.

But after the phone call yesterday, my heart has stopped, waiting, waiting.  I know God hears.  And I know God is near.

And like all those fellow-sufferers found in the Bible - I cry out "I THIRST!!"  Please, God Almighty, hear my prayer, for I thirst.