One more scar......

The Lord said, “Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by.”

Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake.  After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper.  When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.

Then a voice said to him, “What are you doing here, Elijah?”

I have some really good news - but hold that thought.

You have to agree, the picture of the port posted above is downright ugly.  It's more than that.  When it was placed, it wasn't placed correctly.

Supposedly, most women have certain 'considerations' on these port placements - considerations like DON'T PUT IT RIGHT UNDER THE BRA STRAP AREA.  Or, considerations like MAKE SURE THAT STITCH YOU PUT IN TO HOLD IT IN THE VEIN OVER YOUR COLLAR BONE DOESN'T TUG EVERY TIME YOU MOVE.  Or, considerations like, PLACE IT UNDER SOME FAT SO IT DOESN'T STICK OUT SO FAR.

At OSU, the surgical teams no longer do the minor surgery to place a port - they leave that up to the radiology department somehow.

I waited and waited and waited and waited the day of my port placement, and they finally took me into a room that had very little in common with a surgical operating room.  I had not eaten or drank for a good long time made longer by delays, and it all went south the longer the day went.

They had promised me Versaid, one of the nicest twilight drugs available anywhere, anytime; yet when they cut into my flesh, then my major vein to place this dang thing, my blood pressure tanked, and I. got. nothing.

No sweet twilight sleep that you wake up from and feel like you just walked through a meadow full of daisies.  No twilight anything.  No.

Instead, I turned my head to watch the monitors and talked to the "surgical-inserter" during the whole procedure.

My blood pressure was even unhappier than my Versaid deprived brain.

I'm thinking, according to my then in-the-midst-of-chemo-blood-pressure, you should not withhold liquids for that long from a woman who was accustomed to drinking a gallon of water a day.  And that is not an exaggeration for that time.

I drank a lot of water.  Lots and lots. And I had had none for almost 24 hours by the time the delayed procedure began.

The whole procedure was fine, even without the Versaid, although it did cause a little anxiety when they called another person into the already crowded little room to monitor my blood pressure.

Obviously there was a little anxiety all around the room, because later that year, even my surgeon stepped out of the *all-doctors-code* of "never say anything about another doctor's work" mode and asked me one time "how in the world did I get the worst port placement ever?"

***

I have hated it since day one.  It hurt when I slept.  It hurt when I wore a shirt that touched my collar bone where the tubing inside that main artery goes over the bone.  The shirt collar seam would rub it too tight and make it throb.

I've cut some holes in a few shirts to give it some non-rubbing breathing room.

If I do any kind of energetic walking, it throbs to the point that it feels like it might explode.

They've checked it.  And flushed it and flushed it and flushed it until I think there might be an actual scarred hole there - like the hole in your ear from piercing.

They've commented the holding stitch does stick out oddly.  They've commented that maybe my veins are smaller and don't accommodate it as well.

They told me after the first couple of months of chemo, that a port would be a good idea, as they could easily scar up the veins in my arms too much.  Since I was in a study, they usually accessed both arms for blood draws those first several weeks, so I concurred that there could be vein damage piling up.

But, but, but always in the back of my mind was the thought -- if they are afraid of the access and chemo damaging the veins in my arm - does it really make sense to just go ahead and access the main highway in the vascular system - you know that vein that can cause stroke if it gets scarred and blocked?

They assured me there had been many studies done on this possible risk, and that although there were risks, this was best for a prolonged chemo regimen.

Huh.

Huh?

So the port went in, not happily, and it ended up with a lot of blue bruising around it, and from that day forward, we have not been friends.

When talking with my oncologist at one point, she told me that she would like it to stay in for two years.

Two years post treatment.

When finishing up treatment last winter, having lost substantial weight, the thing stuck out farther than the Star Trek uniform buttons.  I would press it and repeat "beam me up, Scotty".  You could easily see it under most shirts.  I was afraid that if my fingernail caught it in the shower, I would rip it out too easily and bleed out too quickly.

My imagination works well even while not reading murder mysteries......

Knowing we had to work together for two more years, new-and-improved Power Port and I kind of called an uneasy truce.  

I would not sleep on it, put pressure on it with clothes, or exercise vigorously if it would just nicely stay in place and not fall apart with any little bump from little heads sitting on my lap.

***

So, I saw my radiologist oncologist a while back, and after she looked over my CT scan, and we talked about the tiny bump there that is causing discussions I would rather not have, she asked me about my port and wondered why I still had it in when it was problematic.

I told her it was staying in a while longer.

She told me "get it out, Karen.  Just get it out".

I was like, really?  Really?  when they are watching a small spot on my bone I can still get it out?

Quite frankly, I didn't believe it could happen until that spot was determined to definitely not be a problem.

When I visited with my oncologist this past appointment, while she was doing the examination, she said "Let's get this out".

It was like Christmas and New Year's and birthdays and magic all together in one sentence.

Because removing that port means so much more than the fact that I am getting that most uncomfortable thing out of my chest.

It means, it means - when she says it, my main oncologist, the one that takes responsibility for my welfare, the one that is ultimately tagged as my main health-cancer-caretaker now - when she says it, it means, "you're not going to need it soon".

That's the really good news.

***

On my cancer sites, there is much discussion on when you are truly declared "cancer free".  Some people believe you never truly are.  Some people believe you carry around that loaded gun for the rest of your life and it could go off at any given moment and rapidly propel you back into the dreaded world of chemo wards and survival tactics.

Triple Negative Breast Cancer is definitely a foe you do not take lightly, nor are you able to ever forget that it has you in its grip.

Some women are told they are "survivors" on day one of their treatment - meaning they are not only fighting cancer day one, but they are also surviving it starting at that moment.

I like that.

But, that's not the same as being cancer-free.

Laymen like to use the term "remission" for the idea that your cancer is beat down and you no longer need chemo to spank it into submission.

I've not heard that word used in my cancer-world.

The current medical term that is used around me and is on the cancer sites a lot now is "NED".  No Evidence of Disease.

That's my moniker now - NED.

Kind of, until that bone spot clears up or grows.

It could be there, it could pop up and strike again quickly and deadly, it could be rallying around and rising up as I type, but for the time being, they can kind of call me NED.

And honestly, for all I know, it could also be tamed. It could have been eradicated.  It could also have the DNA 'switch' turned off since I did the experimental study drug.  It could betray all stats for stage 3 TNBC and not recur at all.

Either way, I am now kind of NED.

'Kind of', until I get that "all clear" CT scan.

So, while those words hold such momentous meaning and feel like good news, they also mock a little in that you get the slightest feeling that 'no evidence of disease' could also mean that a doctor leaves a door open to let the medical facility off the hook if you get to your next appointment and everyone says "WOW!  How did that happen so fast?"

"We're not seeing any evidence of disease, but it could be there none-the-less"......

So, "no evidence of disease" sounds good to my ears, but doesn't sit so well in my soul at times.

In my mind I have toyed over and over with the idea of when do I walk away from this and say "it's behind me?"

Part of the problem with this type of cancer is that it's never really behind you completely.

So in my mind, I toy over with the idea of how do I know it's time to celebrate?

And don't get me wrong - we have celebrated many milestones.  Many "HURRAYS!"  and, many "THIS IS FINALLY DONE!" parties.

I finished chemo - YAY!

I survived surgery - little hurray.  Really, you don't celebrate that one all that much....

I finished and survived chemo again - WHEW!

I finished radiation - double YAY!

My brain fog has lifted some - Good News!

But none of that ever felt like I was done.  Like I could finally say, this part of my life has been put to bed, maybe for a while, maybe forever.

I couldn't ever say that, because, that port was still in there.

So when dear Dr. M. said "let's get that out", I smiled really, really, really big.

We all knew what that meant.

***

A couple of weeks ago Scott and I went to "Amish Country" to a seminar produced by the Amish people there to hear and see Ray Vander Laan.

Three years ago in March, we made that same pilgrimage.  I had to sit in the car for a while during part of the seminar on Saturday, and couldn't make it back Sunday, because that week I got sick.  I had "episodes" of severe diarrhea and nausea, then would miraculously feel better within an hour.

It reminded me of morning sickness in a way.

My glands become swollen.  I was concerned about the glands in my neck being swollen and not going down.  The glands in my stomach and groin area were swollen.  I wondered after a while if I had mono.  I wondered if our water was contaminated since they were running all new pipes in our community.  I wondered a lot of things, but never got a definite diagnosis.

I just didn't feel good for three months - then it just all seemed to go away.

Then in late summer, I had a hot lump in my armpit that my obgyn thought might be an infection from shaving, but told me to make sure that I didn't miss my annual mammogram.

I scheduled my annual mammogram which ended up being in January as they were so backlogged, and I was not too concerned as I had a history of "lumps and bumps".

In late November, a hard lump showed up on my chest wall between my collar bone and my left breast.

I still could not believe it was anything other than clogged lymph glands, as that is what I had been told for quite a while, but when I called and told the lady scheduling the mammogram that I had a lump to look at, she was more concerned than me, and rescheduled me for December "to get me in quicker".

On December 22nd, I had my mammogram, and the nurse took me immediately to the ultrasound room.

In the ultrasound room, I saw what she was looking for - lumps in my breast, a lump in my armpit, a lump on my chest wall.

She grabbed a radiologist who looked at the ultrasound and I tried to get some answers from him, but he was in a hurry, and told me I needed a surgeon and quickly left the room.

I still remember sitting in that small dressing room knowing what I had seen on that ultrasound screen - I knew that it was cancer, and knew that not only was it cancer, but that it was a quickly moving cancer.

From March when I first got sick until December I had not been alarmed - I'd been diagnosed "auto-immune" for maybe over ten years, and that can mean anything can happen to your body and there are very few answers and you just get used to not having answers for odd things happening.

I sat in that dressing room, and I didn't cry, I didn't become frantic, I didn't pass out, but this 'knowing' possessed me deep inside, and I knew.  I just knew.

But if I had to pinpoint a time when I think the cancer was first invading, first developing, first plotting a takeover and my demise, I would point to that week in March when my "three months of mysterious misery" disease started.

And it had all started that week that I sat at the Ray Vanderlaan conference.

***

Two weeks ago, I sat in that same building, and listened to the same speaker, and the words kept running through my mind "beginning and end".  "Start, finish".

Alpha and Omega.

My friend sitting beside me leaned over and said "this is where it all began three years ago".....

She might have noticed a few tears on my cheek.

My body was remembering as well as me, and the feeling of putting "bookmarks" on this was overwhelming.

I listened as Ray once again described his lessons on suffering.  He talks about journeying through the desert, not knowing when or where your next meal might come from or where your next drink might be found.

He talked about the "shade" - about how we read 'shade' in the Bible and think big oak or maple trees with lush grass underneath - and he showed us a picture of what 'shade' was to the Hebrews - a small tree not too much bigger than a bush, that doesn't necessarily cover a whole human being if they lay underneath it, and that little bit of shade doesn't have any lush grass under it, it hardly has anything but desert sand and dirt and stone.

He talked about journeying in the desert and the snakes and scorpions and wild animals that are all about you and how every step can be painful as the stones and rocks bruise the feet; how the time of suffering in the desert is not what we want or desire - but when we are in it how we need to walk it and realize it's not what we have been taught in Sunday school so many times.  Rather a desert experience is just what it sounds like - it's suffering and difficulty and poisonous and treacherous and sometimes some don't make it.  Sometimes, some quit.  Sometimes, some are taken out not by anything they have done, but sometimes the wilderness is just too difficult.

It's not about putting a "sunshiny face" on difficult things - it's about realizing what the wilderness is, and realizing how to walk it.

Ray showed us slides of a "green pasture", a hillside that looked devoid of anything green, but a closer view showed small clumps of lonely green grasses spread sparsely over the desert hillside.

He said that was the green pasture the Psalmist talked about in the 23rd Psalm.  He taught that we are rarely belly deep in alfalfa pastures like we like to imagine when reading that Psalm, but instead, we are lead to a sparse desert area eating small clumps of grass along the way.

He told us that each sheep seemed to get just enough.

He told us that each of us need to trust like that - trust that our Shepherd will lead us to green pastures that have just enough clumps of grass to fill us each day.  

Not too long ago on one of his journeys there, he taped an Arab shepherd with his sheep.  He showed us a sheepfold and the doorway or gate where the shepherd would stand or sleep, guarding the whole while against predators that would rip the sheep apart if allowed entrance.

He had video of how the shepherd would lead the sheep out daily and how they all followed his every step.  On every steep path, every long go-around corner, every step of every day was directly behind the shepherd following his every footfall.

I get that.  We've had enough wilderness experiences to know that you follow the Shepherd.  Even if all looks steep and rocky, even if all looks barren, even if all looks lost, you follow the Shepherd.

Still vivid in my mind is the video he showed about a lost sheep out in the desert wilderness.  The sheep would only bleet but wouldn't move.  The video showed the shepherd coming over the hill, calling for the sheep the whole way, and even though you could tell the moment the sheep heard his call, the sheep wouldn't move.  He showed the shepherd calling its name and getting closer and closer to the sheep, and still it wouldn't move.

The sheep could hear the shepherd, even see the shepherd after a time, but it would not move.

After seeing slide after slide of the shepherd getting closer, closer, finally the shepherd is close enough to pick up the sheep - pick up the sheep that would not listen to his voice and come to him when he called, pick up the sheep that would not move towards him, but would allow him to pick it up once the shepherd was close enough.

And I just sat there and wiped away tear after tear.  We had walked that desert-wilderness experience for a season and it looked like we were coming out on the other side.  We had walked it close on the heels of the shepherd, trying to step into His every footstep.

We had suffered for a time, and He had fed us clumps of grass the whole way.  We never saw more than that day's clump of grass, we never saw the next hill, but we followed.

We were bruised and hurt and tumbled and scared.  We were attacked and injured and scarred for life in some ways.

It's not something that I look back on and say joyfully "Oh, what a journey!"  It's not something I can minimize and say "it wasn't that bad".  It's not something that I think I can do easily next time, having survived and learned this one.

It was something that was so difficult, so dry, so sparse, so dangerous, that I wince every time I think on it.

Sometimes, a lot of times, we were that sheep standing so scared out there in that vast wilderness just bleeting and bleeting, hearing our shepherd's voice but not daring to move, not wanting to place one foot outside of what was safe at that very moment even when called into a safer, better place.

Sometimes it's really hard to realize you have been found, realize you have been saved.

I'm still pushing back veils of fog trying to find the correct footing on the easier part of this journey, but I've been promised that every step of this journey, every hurt, every tear, every difficult rocky path that looked too hard to get over, was not what I thought it was.

There were lessons along the way, deep valuable lessons that were impressed upon my heart and soul, but the lessons were not the reason.

There was pain beyond words that shrieked and whipped around my body and ripped at my person that twisted me, hurt me, shaped me, but the shrieking, twisting tornado of pain was not the reason.

There was earth shaking and earth shattering words that rocked our world and shook out anything not important; it changed our world forever, but the heaving and rocking and shaking of the earth beneath our feet was not the reason.  

There was a fire that burned anything left, anything that we thought important, anything that we stupidly clung to, the fire burned the bits that we still clung to and they could be grasped no more.

It all seemed too much at times.  The storms and earthquakes and fires seemed too destructive to survive.

But at the end, at the end, there was a silent, soft, blowing wind.

And maybe, the wind was the reason, because like Elijah, after all the violence and storms and ravaging fires going on around us and realizing that those were just the "stuffs" of life that a lot of people go through, a lot of people suffer through; but in the end, there has been a soft wind blowing asking me, "What are you doing here, Karen?"

***

After the conference I just wanted to sit and weep.  I had heard the soft quiet wind, and had heard the question, and knew the answer.

The desert, the wilderness is not uncommon to humans.  We can journey it, walk it however we choose - but all of us at one time or another get a chance to be in that wilderness.  We do choose how we walk it, whether rebelling the whole way, or staying close on the heels of our Shepherd, trying to step in His very steps.

At different times in my life while walking the desert wilderness, I have hated it, rebelled against it, fought it the whole way.  I have cursed it, cursed evil and the pain it inflicts.  I have hissed at it and threatened to quit.

This time I watched the fury of the tornado, the earthquake and the fire while in the midst of it all, and towards the end, I felt the soft wind on my face even though I was broken and hurt and in pain.

But not lost.  I know a Shepherd that looks for me when I am frozen in a spot, frozen in fear or pain or hurt or grief and He comes looking for me and doesn't stop until He finds me, picks me up and takes me back to the sheepfold to tend to my wounds.

Once again tonight I fast for a procedure tomorrow needing anesthetic, hoping that the medical team I meet when I walk through those doors at 10am is awake and confident in their skill-set.

In my mind tonight, there's a soft wind blowing and I hear the question again - "what are you doing here, Karen?"

It's a gentle wind.

***

By this time tomorrow if all goes well, all that will be left of the insistently contentious port will be another scar on my chest that will fade with time, but never disappear.

There will be a weakness and scarring on a most important vein in my body.

The scars remind me of the earthquakes and fires that I've survived.  The scars that are on my body and on my spirit and on my soul that have been tended by a gentle Shepherd.

The scars of suffering and journeying, travailing in the desert.

And I'm glad I am here to feel one more scar, to feel that gentle wind, and have my soul be asked questions that seem unanswerable by earthly voices.






    












  

Living way too loud

As I left the Stefanie Spielman Center yesterday around 5pm, the sun was weakly shining.

On the way down, it had been cloudy and spitting snow.

As hard as I try not to think about these every-three-months follow up appointments, as much as I remind myself that "it's just an appointment", as much as I pray, meditate, memorize, listen, learn, divert -- my brain still feels the need to sound big alarms.

They sneak up on me and grab me and usually the 24 hours before take off, I've got pre-flight jitters.

At that point, there's only a few ways my body likes to take care of the "jitters":

1.  Go and stay with some grandkids.  You can't think around them.  Only I couldn't, because I have still enough cold and cough and sniffles to not want to infect a five week old baby.

2.  Watching back to back episodes of Law and Order - and I do mean all day, back to back episodes.  It's the one thing I like about cable TV - every three months I can relieve my stressing brain by making it catch perverts or murderers.  And bonus points - I've found that having a good case of chemo brain makes all those episodes I've seen before almost all new!

3.  Going out with other folks and drinking a glass of wine which loosens my tongue enough to talk and laugh easier.  We all know I'm an introvert, so this is not my first "go-to" - but I know myself well enough to know this is what's best for my soul, my spirit, my body, my brain to do on those days.

4.  And the best one for me and my personality - engaging in deep, deep discussions about the Bible, God, Jesus and how does it really all work in this life?

I was blessed enough on Tuesday, to be able to do all three.  We met friends at the new Purple Grape in town and gave it our blessing by sitting there for hours talking about God.

That's after I had spent most of the day watching Benson and Olivia do their "thang".  (and if you have to ask who Benson and Olivia are, I'm not sure we can be friends.....)

I'm in a couple of cancer facebook groups.  A couple are private so you don't see my comments, which is a great relief to me as everyone around me deserves a break from "cancer-talk".  The groups are awesome, for just that reason - you can only "talk" this out with those around you so much, so long.  You need someone that "gets it" as well - and these ladies definitely "get it".

Privately get it.

I'm not the only one to pop up with pre-visit jitters.  And just for the record, since I brought up God already, pre-visit jitters are not "sinful", are not "lacking faith", are not the inability " to trust enough".  Pre-visit jitters is your body's way of reminding you that something horribly painful happened the last time your brain looked at that calendar and saw that appointment, and it's just telling you "there's a pattern here - let's pay attention and undo any unnecessary harm".  Meaning, if you were horribly hurt by another incident and your brain saw the same pattern churning around and popping up again - it tells you the same thing.

Pre-visit jitters signals to me that at least part of my brain is working and doing it's job....

The part I'm working on, is getting my brain to stop my body alarms from going all crazy, because in my mind, it's mostly ok.  The rest of my body just hasn't completely caught up yet.

Not that there isn't a stupid spot on a scan on a bone that is too small to biopsy and diagnose; not that those pains in my liver area can mean more than maybe a faulty gall bladder; not that this disease hasn't snuck up on me before.....

My brain goes crazy reminding me that I was shocked before with a visit down this road and I should be ready for shock again.

But, I do my brain and mind and soul homework, and get to a place where "it's ok".  I have to live, I have to laugh, I have to be able to get out of that spot of concern, and live.

I could take a couple of Ativan, and at least if my body continues to sound off alarms, I'm happy about it.  But, I haven't taken Ativan in a very long time, and I'm ok for the time, this time, working out the bugs.

Until I get on the road.

You are pretty much glued to one spot, with your brain turned on, and my sneaky brain takes every opportunity realizing it's at advantage once I merge onto that interstate.

The better days are when traffic is heavy and I really have to watch the car in front of me, the texter beside me, and the semi that is two hours behind schedule burning up the road a mile behind me.

But yesterday, even Columbus roads could not cough up any congestion.

For me, there's only one cure - loud music.  Like really, really, really loud music.  Like my ears are still ringing today loud music.  Like when I finally get off the interstate and pull up to a red light at a busy intersection, mothers with sleeping babies in the car next to me look over and frown.

I've used Christian music before, but it makes me cry, makes me feel too deeply, and I just can't afford to "go there" on that particular drive.

So it's the Beatles.  It's Led Zeppelin.  It's Elton John.  It's the old Pink Floyd.  Almost anything 60's or 70's.  The Eagles.  Doobie Brothers and of course the always loud and feel good CCR.  Much to my relief, Columbus has a couple of different stations that I can pick up thirty minutes into my drive that can play all of those in one car ride.

I mean really, other than the guitar intro that has to be heard at almost full volume, how can I argue these lyrics?

"Green River"

Well, take me back down where cool water flows, yeah.
Let me remember things I love,
Stoppin' at the log where catfish bite,
Walkin' along the river road at night,
Barefoot girls dancin' in the moonlight.

I can hear the bullfrog callin' me.
Wonder if my rope's still hangin' to the tree.
Love to kick my feet 'way down the shallow water.
Shoefly, dragonfly, get back t'your mother.
Pick up a flat rock, skip it across Green River.
Welllllll!
Come on home.

(for those of you not familiar with CCR, you'll know it when you hear it...  http://youtu.be/kpijXwXOCUo )


And I got there in good time.  No road troubles, no problems, I'm plenty early for my appointment.

I like it better when I have to throw my car in park and sprint into the building......
 
***

I know I've said it before maybe at least 5,487 times - but I love my oncologist.  Dr. Ewa Mrozik.  She's awesome, and I know she is the reason I am sitting here today.

As I stated, I'm on a couple of cancer pages, and one of those give links to lots of studies, lots of new drugs and new treatment plans for my particular cancer - Triple Negative.

Posted a while ago, was a little blurb from the big annual San Antonio Breast Cancer Symposium that is held every December where doctors, researchers, lab results and everything new in breast cancer is brought out and discussed for a few days, but a little blurb was posted about the use of the chemo drug Carbo for this particular cancer and having good results when used in tandem with other treatments.

She had me on that chemo two years ago.  She knew that before they talked about it at San Antonio just last December.  She is immersed in her literature, the latest trials, the biggest successes, and I love her for it.

And I will say this one more time, I think I am sitting here today because of that.  A lot of ladies don't just walk away from Stage 3 Triple Negative.

***

Anyways, my appointments went well.  They pulled blood for the study I am currently in, and even though I was a little concerned that my blood was really dark - almost blackish red - all my results - liver, red blood cells, white blood cells, anemia, almost all of it was in a "normal" range for the first time in a very long time.  (please, temper your applause, I do my thyroid numbers next week.... that nasty beast.)

But I repeat, mostly normal ranges for the first time in a long time.  Applause, applause.

I think I already knew that, because in my brain the ability to cry easily is closely related to low red blood cell counts, and my ability to cry over anything has slowed considerably.

Then I waited for Dr. M.

There's no radio in there.  Not really any good magazines unless I want to read about more cancer, which I shouldn't while waiting.  My "waiting-out-my-contract-replacement-phone" is a little lacking in the department of connecting to any diversionary apps.

I look around.  I pray over the conversations I can hear vaguely in other exam rooms.  I wait.

She walks in with the biggest smile.  And I know I'm reading her right in that she is relieved to see me.  Relieved to see one of her successes.

So far.

Sometimes we forget doctors are human, and the ones I know love to go to work and see the ones they have helped and healed.  So when I see her enter with a big smile, I know it's a good start.

I appreciate her open and honest face.  Maybe it would bother others and they would want a big smile every time, but I don't.  I want her to be intellectually honest and emotionally honest as well.

We talk about my scan that was put off three months ago until this month.

It's still not scheduled for this month.

We talked, she threw out her findings, her thinking, her knowledge, and I told her I still hated the idea of more radiation.  More radiation like the CT scan that's a power-ball of radiation.  More radiation like the nuclear scans.

It seems every time I step into a radiation room deep in the bowels of any facility, my brain goes to hell in a hand basket and is enshrouded in a deep fog for months afterwards.  So, I don't like the idea of what the radiation is doing to my body down the road, but I also don't like the connection in my brain - right or wrong - that the radiation puts me in a deep fog that takes weeks and months to climb out of.

She smiled at me, waiting for my answer.  I asked her "will I hate myself in the morning if I say 'wait' again?"

She's didn't grow up in this country, so that terminology wasn't immediately connecting with her, then she laughed and said she was ok with that decision, too.

***

She wanted to know how my "brain appointment" went.

It's a long horrible story better told on another day, but I told her my hopes I had for it, then my disappointment when it didn't help any.  It didn't help any, nor was I offered any help like I had been hoping would happen.

I told her that when the over four hours of testing were done, which totally burned any brain cells still working, that I finally talked to a psychologist, and she told me "you've been through a lot".

I knew that.

She told me she could prescribe me some antidepressants or anxiety meds.

I've done those before, and that's not what my anxiety is about.

My anxiety is about my fear that part of my brain is either missing or damaged or whatever the hell has happened to it, and no one can tell me anything to do for it, other than "wait".

The mid-thirties woman that I saw was smart, but I felt like she was no more in tune with "chemo-brain" problems than I am.

Maybe that's not fair.  At least, that wasn't her specialty.  And I left there with a hand written note that she passed over her desk to me as she said "since you probably will not remember any of our discussion"......

She noted to "not expect so much of myself".........

She told me not to try and multi-task - that obviously my brain couldn't do that now.  She told me she could tell I had high expectations for my brain, had high intellect, and was used to being able "to keep multiple balls in the air".

And now I couldn't, but that didn't mean I was not valuable.

If I were twenty years younger, maybe that would have helped me feel better.  But I already knew all of that.

All I want to know is how to repair.

And so far, no one quite has a specific road map for this particular journey.

So I told all of that to Dr. M.

She told me I seemed much better than I had just three months ago.  She told me that she didn't think I was realizing just how much better I was doing.

She told me I still had a ways to go and regaining this was not a gradual level climb, but rather it seemed to happen in spurts and to be patient and wait while the next spurt might be developing.

She says she realizes from getting to know me that I'm not a very good "waiter".

I love that woman.

***

I had a moment in time a while ago, that has re-affirmed what she told me.

We went out to eat with a group of people to celebrate a birthday.  We were sitting around a table and someone was telling a painful health story.  He stated he had two words to say to a somewhat uncaring, unsympathetic nurse.

I blurted out the two words I would have said in that given situation, and suddenly it was most hilarious.

If nothing else, good or bad, I have been a "blurter" all of my life.  It's gotten me into a bit of trouble at times, other times I can tell hilarious stories about my life that I shouldn't.  But get me involved in a good group of folks telling good stories, and I can blurt and either everyone laughs hilariously, or I spend three weeks doing damage control.

At this table, I once again "blurted", and this time it was hilarious.

But what one of my ears caught, what has stuck with me for a few weeks - was one of my friends clapping her hands and saying delightedly - "SHE'S BACK!"

Meaning, I had reached a spot in my recovery that they had coaxed me into for a very long time.

She said out loud - "SHE'S BACK!".

I think about that and smile over it every time, because to me, it's a point on this mysterious map that I've been trying very hard to get to.

And her comment meant that I was finding some landmarks through this maze and was partway there.

***

I smiled as I walked out into the parking lot after my appointment.

The sun was shining.

Even the traffic at 5pm was not as difficult as it can be at that time on 315/71 in Columbus each day.

I called Scott and told him about my appointment.

He started to cry.  He tells me for days before my appointment that everything is fine, there's no need to worry about it, when all the time he worries more than I do.

That drive has shocked him as well.  He has that same brain connection.

***

So, all this to say, for the time being, I'm good.

And smiling.

I still have what I call "fear and grieving days", and probably will for the rest of my life, but most days, the grieving door of my grief and fear room is closed and I can live.

And work out some brain damage.

I have various appointments lined up, and need to schedule more, but for now, I don't see my beloved doctor for another three months.

My brain can calm down for a while.

I'm good until April.

And I'm not kidding - when I got into the car and started it my radio was on way too loud, and this is the song that started......

You cannot, cannot turn the radio down when this one starts.

"leave that sinkin' ship behind...."  Today.  Leave it behind today.

"Up Around The Bend"

There's a place up ahead and I'm goin' just as fast as my feet can fly
Come away, come away if you're goin', leave the sinkin' ship behind.

Come on the risin' wind, we're goin' up around the bend.

Bring a song and a smile for the banjo, better get while the gettin's good,
Hitch a ride to the end of the highway where the neons turn to wood.

You can ponder perpetual motion, fix your mind on a crystal day,
Always time for a good conversation, there's an ear for what you say.

Catch a ride to the end of the highway and we'll meet by the big red tree,
There's a place up ahead and I'm goin', come along, come along with me.

http://youtu.be/EkjtklIJdLM

He loves to sit with me

He says he knows the moment he knew he first loved me.  He says it was the summer I was going into 7th grade, and he was going into 8th.

My uncle had died and we stopped at my younger brother's baseball game on the way home from the funeral.

He happened to be there.  He was always at the baseball field.

He says he watched me walk across the ball-field in my bare feet and short purple mini-dress.  He remembers how the dress was tied in the back.  He remembers the colors in the dress.  He remembers my long, dark, curly hair falling over my face as I watched my steps in my bare feet.

He remembers I stood at the edge of the ball field and watched the ball game as I felt a little out of place being there in a dress.  He didn't know it was much better for me to stand there alone than to stay in the car with my parents.

We had grown up in the same small community, but I'm not sure we were even aware of each other until Junior High.  Our three small rural village schools consolidated into one larger school at the start of seventh grade.  There were more buses in that small parking lot after school than any of us had seen together before in our lives.

I was sitting, leaning up against steps with some new friends I had met that day, when a tall, skinny kid came over and asked me if I wanted to "go with" Scott Gerwig.

I was totally confused, and not quite sure who this tall skinny kid was, or who 'he' was.  Being greatly encouraged by my friends, I said "maybe".  The tall skinny kid then said "he saved a seat for you on the bus".

The bus routes for our school district were long and laborious.  My basic bus ride home from that day forward was approximately an hour long.  The buses at the Junior High would take you to the high school where everyone changed buses to get on the bus taking you home.

This busing system created a moment of time when the twenty minute bus ride from the Junior High to the High School  was nothing but insane pubescence.  It was a welcome time of no high school kids flaunting their superior strength stomping down smaller weaker ones.  It was loud immature boys making stupid jokes.  It was loud immature girls pretending and creating drama.  They packed us in like sardines and you prayed that someone saved you a seat.  The bus ride to the junior high that morning had been an eye-opening education for me after the uber-controlled safety of all my elementary school bus rides.

And here I was sitting on a bus with a boy that wanted to kiss me on the lips at the end of the bus ride.

I didn't let him kiss me on the lips the whole three months we "went together" that year.

(Ok, there was the one time we sat together at the fall dance that I let him kiss me.)

I hardly looked at him, I was so shy.  We barely talked.

But he tells me he was smitten.

I asked him a while ago why he stayed with me that first time we were so young together - he was a year older, a year 'more worldly', talkative, popular with his friends and always playing sports; and I didn't talk, didn't interact a whole lot, looking back I could not have seemed all that interesting, yet we were considered "a couple" as you could only be in Junior High - and I asked him why he was ok with that.

He told me he just liked to sit with me.  

***

He told me the other day as he was starting laundry, and I was apologizing for being an insanely stupid person for not having that done, he told me that he "liked to take care of me".

That's a far cry from our early married years.  Not that he was negligent, but I married a 'jock'.  We were at ball games sometimes three and four nights a week.

It's not a great environment for young kids, that often.  They play in the sand and stones in front of the bleachers that old men spit in before climbing up and sitting down.  The same stone and sand that dogs peed in while sitting with their owners.  The sand and stones that sometimes didn't get washed off with rain for weeks.

We rarely had a washer and dryer that worked in tandem.  Those days, the laundry duties were all mine.  When the dryer would quit again, I hung out loads and loads and loads of laundry, begging them to dry.

One of our children had such sensitive skin that she could not wear Pampers, could not wear Luvs, nor Huggies, without developing open sores.  I washed loads of diapers daily - twice in hot water to make sure there were no lingering allergens - and would dry them over the heating vents of our house.  Someone once gave me a bag of cloth diapers and I almost kissed them, as it meant I had more diapers in the rotation, and could maybe get to work without having to start the second load to soak.

Through the lens of that viewpoint, our lives have changed dramatically.  After spending lifetimes at ball fields and gyms, we rarely go now.  We don't watch it on tv all that much.

Our laundry barely makes three loads a week.

Scott was brought up short several years ago when friends brought pictures of all the parties our church group had done when our kids were little.  As we looked over them, I would be in some of the pictures - always alone.

He asked "where was I?"  and I looked at him sideways, because he never quite realized really how much he missed when he was coaching.  He never quite realized how many times I went 'alone' to any event.  How many times he missed his kids' events, even though he tried like crazy to get to a lot of them.

As time went on, our work schedules were not similar very often.  I usually attended my events alone, he attended his alone, and it was all ok.

***

After our children grew up and left home and we went through the usual post-children-marital-wrestling that most couples do when faced with the fact that their job of nurturing and helping and promoting and just being there for their children almost non-stop was done.

We were suddenly dropped into a different world.  We grieved our child-less home.  We had so loved being parents and enjoyed the pleasure of young ones in the home.

Then we discovered, we really enjoyed being with each other again.

We enjoyed gardening together.  We enjoyed trying new restaurants together.  He loved grocery stores, and I would tag along and pick out new fruits to try while he excitedly spent a whole paycheck when swiping his card at the register.

After too many years of too many stresses and hurts and agonies and pain and sorrows, we learned the art of relaxing.

We would garden, make a pretty spot, and sip coffee there in the morning-hours before leaving for work.

He loved to watch sunsets and would beg me to come sit with him in what I aptly named "mosquito-park".  He didn't mind when I would go out in 90 degree heat with long pants, socks, shoes, long sleeves, and a hat trying to avoid bites.  Those pesky little creatures for some reason loved me, not him so much.

I looked like a homeless bag lady, kind of killing the mood of summer nights, wine, relaxation and bliss, but he didn't care as long as I would "just sit with him" long into the dark.

***

He took me to my first day of doctor's appointments at the Stefanie Spielman Center / OSU in Columbus.

He sat with me through the different appointments that day, watching each doctor examine me, watching each one tell me news that fell like bricks on top of us, watching me ask questions and receive answers that we didn't really completely understand at the time, but that I understood enough to know I was in a bit of trouble.  

He sat with me in my robe in some of the waiting rooms as all the other husbands were doing with their loved ones as well.  He held my hand.

He kept lifting my chin so I would look at him when he talked to me.  He knew he couldn't let me go too deep into my 'head-down-thinking-mode' that day or I might never come back out of myself.

When they asked me to get into a study and told me it would be four days a week for the next four to five weeks, I looked at him knowing I needed the study drug, but knowing I also needed a driver.

We had timed our drive that morning and found we live one hour and forty minutes away.

He never blinked, never wavered, never questioned, never hesitated.

He said we could be there.  Four days a week chemo at the main campus OSU/James for the next five weeks.

He has a job.  He teaches.  Every day.  He doesn't call off on sick days except for when he is really, really sick.   He had some sick days saved up, but as I quickly tallied up the days in my head that this treatment was going to require the next six months, I knew he was going to miss too much work.

***

He sat at the foot of my bed in the Phase One Study Drug wing at OSU/James while they brought in a caddy full of blood tubes and prepared my arms for the onslaught of needle sticks for the next five weeks.

He hates needles.  I've sat by his bedside making him look at me while he was poked and stuck multiple times the past ten years for all of his surgeries and illnesses.

He watched as they put that first stint in each arm to open and shut for my blood draws that day.  And we both watched with an odd knowing that after the first needle stick, our lives would never be the same.

Not ever again.

We had no idea how much everything would change.

That first day, he sat at the foot of my bed, we chatted with the nurses, I openly admired their ability to pop up my veins that were always a bit reluctant when doing all of my thyroid blood draws, and then they started the blood pulls.

A nurse entered the room with large syringes and a few bags, starting an IV.

Then they brought in that first bag of chemo.  I was sitting up in the bed watching their every move, watching them prepare the drugs and drips.  I don't think anyone can ever get themselves ready for a treatment that will alter their life in a few day's time.

I know I couldn't.

I had never cried with medical issues - I get frustrated, I get irritated, I get tired of them, but no tears.  After the pre-treatment drugs were started, the chemo drip began.

There was one quiet tear on my cheek.  I looked over at Scott sitting quietly at the foot of the bed in that small room, and there was one quiet tear on his cheek.  We both watched, then we both looked away.

We sat together in that room and watched, then realized we couldn't watch any longer.

We were forever changed.

***

The Bible says that when you marry, you should become "one flesh".

We might have messed up a lot of things in our lives, but we have accomplished this at least.

When he hurts, I hurt.  When I hurt, he hurts.

He took off most of those first five weeks and stayed with me in Columbus.  He had understanding employers that could see his deep pain, and knew that he needed to be there with me, and they let him take that time.

He took off the following Wednesdays every week to take me for my weekly chemo treatments.  We became best friends with our chemo nurses.  We loved them and loved how they treated us and answered our every question.

He sat with me and hugged me and cried with me every time I was denied my chemo treatment because of low blood counts.  He took over the job of listening to the medical instructions and explanations, and although he didn't do it as well as I used to do it, he would take notes and make sure I called in on the correct days, took my meds correctly, understood how to protect my blood counts by staying away from germs.

He quickly learned that my worst day after chemo was Friday, and took that day off also to care for me, to make sure I didn't fall, didn't forget my nausea meds, didn't have to crawl back to bed unassisted.  

The man that didn't care a whole lot about the medical field, quickly learned terms and conditions that were suddenly important - he learned that I had difficult reactions to the steroids they pumped into me each time, and he learned to watch for that steroid withdrawal that was always so difficult for me approximately thirty hours after treatment.

He would notice my tremors and shaking and would get me into bed quickly and cover me with all the blankets he could find in the house while my body shook with iceland-cold and fever while the steroids leaving my body allowed the full impact of the three days of chemo to rise up and slap me hard.

He listened so closely to my doctor and chemo nurses that he timed my oral chemo for each of those three days almost to the very minute.

We both dreaded the extra Carbo chemo treatment every three weeks that was added to the once a week Taxal and the three-day-per-week-chemo-regimen.  As if the other chemos were not enough, Carbo felt like a three-pronged rake had been dragged through my intestinal track.  I was pretty sure there was not any lining left in my mouth, esophagus, stomach, intestines - not any lining anywhere for any protection from poison rushing through you.

The last couple of months of that first set of chemo seemed like time stopped.  It seemed like there was nothing in life other than spending our days injecting, ingesting, and recovering.  That's all we did.

I started to feel my feet fry.  Then my hands.  And I was pretty sure my brain was on fire, burning.   They all felt like there were hot needles being poked in and sometimes steps felt like I was only pushing those needles in further.

For the first time in my life, my steps became uncertain and painful.  For the first time in my life, I came down stairs one at a time, clinging to a hand rail so I wouldn't fall.  For the first time in my life, I had to stop halfway up the steps and sit down and rest, as my red blood cells were screaming for oxygen with any little exertion.

Stairs are especially difficult when your red blood cells bottom out.

He would find me sometimes at the top of the stairs laying back where I just needed to stop and rest for a bit to not push my heart too hard when it was taxed, and he would sit down beside me.

He would watch me closely the weeks that I missed treatments - once I had to miss two weeks of treatments and get a blood transfusion to bring up my sagging red blood count - and he watched me come miraculously back to life, miraculously begin to smile and joke and laugh again, miraculously be able to start simple tasks again - and he would walk in the door after work and smile really big as he listened to my too loud music, too loud tredmill-walking-bragging, too much life all of a sudden.
He would be so happy, but then he would subtly remind me that I had to go back.  

He would never let me quit.  Not that I wanted to quit, but when I had forgotten how good it felt to feel better, I found that I was reluctant to submit myself again to the great pit of awfulness that my chemo regimen swung me into.

I finished that chemo regimen in June, had surgery in July, and at my follow up appointment with my oncologist the beginning of August, she told me that she wanted me to do three more months of chemo.

We both felt like we had not heard her correctly.  We both felt like we had just been punched in the gut.  We both were not sure how we were going to get through this.

My body felt weak and ravaged.  I was pretty sure my bones and teeth were hollow, and that there was not one inch of muscle mass left within me.  My hair had just begun to grow back.

He sat there beside me in that exam room, he looked at me, I looked at him, and we told her we would be there.

We agreed with her, and he scheduled his days off again.  He had very few left, but insisted that he could - and would - drive me, sit with me and take care of me again for this chemo go-around every three weeks.

I secretly thought it would not be that difficult after what I had been through the first six months of that year, that every three weeks sounded easy after doing chemo previously for three days each week.

I started the chemo, and it didn't seem that bad.  Then, I contracted every germ within a five mile radius.  He took care of me and sat with me for two weeks.  He ran to the pharmacy for me day after day after day.

He missed some work again.

He took me to the second of four chemo cycles.  It hit me a little harder, but still I didn't think it was that bad, then again, I came down with a bronchial infection.  He took care of me for two weeks again.

My body seemed to be all spent out.  It seemed to have nothing left of any value to counteract anything.

I didn't think I could go back for the last two treatments.  I argued that this round of chemo had seemed almost "optional" and that it probably wouldn't make that much difference if I didn't finish it.

Every time I thought of those last two chemo treatments, my body shuddered.

I did not want to go back.

He sat with me, listened to me, held my hand, and let me agonize over it, but we both knew that I would be going back.

I lost thirty pounds.  He made sure I was getting enough calories each day to exist.  I had no appetite, he would run to the grocery any time I said anything sounded good.

But nothing sounded good at the end, nothing tasted good.

Some days, he would bring me a plate of food from the kitchen that I couldn't stand to be in, filled with food that I couldn't stand to smell, couldn't stand to look at, couldn't stand to think about chewing, and he would sit with me, and talk with me, and I would eat it, then he would take the plate and clean up the kitchen, keeping my nausea as low as possible.

I never thought I could be that sick that I couldn't do simple tasks without gagging.  He never complained, never thought I was being weak - instead he reminded me of how strong I had been all my life, and how I was going to be strong again.

***

I started that round of chemo September 7th.  His gall bladder started to torture him in October landing him in the ER a couple of times.

He finally had it out in November, but was still vomiting.  He needed more hospitalizations, more surgery in December.

Our son stepped in to help when he was hospitalized.

We were miserable to be around.  All we talked about was nausea, vomiting, getting better, eating whatever we could to try and feel better, get better.

We had determined to spend that Thanksgiving alone and quiet and apart from food neither one of us was craving.

He told me he was thankful to be sitting in our living room together on that day of Thanks.  Even though we both felt weak and fatigued and just downright sorry, we were thankful to be together.

***

By the end of my almost year to that point of treatments, we were both spent and our health was poor.  For both of us.

By the end of December, I finally started to feel better.  I was not hungry at all, and still had to count calories to make sure I was eating enough each day, but I felt better.

I started my radiation in January, and decided to stay in Columbus each week at my daughters' family homes, and came home on weekends.

There was a common question at each of my follow up appointments, each time I ran into one of my chemo nurses on the elevator, each time I had a blood draw or port flush - the same question - "where's Scott?"

They looked at us like we looked at us - like we were one unit.  One flesh.

He had been there every step of the way.  He had listened to every difficult conversation with every doctor and nurse.  He had guided me when my brain wouldn't work any longer due to chemo and I literally could not find my way out of some buildings.  He had understood what it was felt like to be abandoned by almost everyone, and comforted me in the loneliest time of my life.  He realized he was my lone rock, and he stood that test beyond most men's endurance.

***

With him being sick and using all of his sick days for my treatments - he could not miss any school for a few months, until he had built up sick time again.

I drove to my radiation treatments each day, gloried in making new friends in the waiting area each day, and felt like I was somehow, miraculously stepping back into life.

I told him about my new friend that was finishing her radiation treatment and how I was going to go back to the center later that day as they had a bell-ringing ceremony to signify your end of treatment.

Knowing that he had no sick days nor any other kind of time off available, I didn't even hint that he could or should be there on my last day of treatment.

A few days before I was released, I met with my radiation-oncologist and when the appointment was over, I bolted to my car.  I got in, sat down and sobbed.

Then I called him. I kept using Starbucks napkins to wipe my nose and when he finally answered his phone, I could barely talk.

He was instantly alarmed, and asked me what had happened with my appointment - I sobbed out the words - "she said I'm done.  She said I only have two more days and I'm done."

I could hear him taking a long time to answer.

His voice wavered and he said "you're done.  You're almost there, sweets, you're almost done".

When I got dressed the day after  my last treatment, I walked out into a waiting room surprisingly full of people -- all people that are dearest to me - dearer than anything on earth.

My three children, and their families were there.  They had pulled their kindergartners out of school.  They were all jumping and yelling "SURPRISE!" and I cried.  And cried.

And then I walked over to that guy that had planned all of this, and didn't have any days off left to take, and still he showed up on the most important day of my life in a long time.

We all went out to a lunch he and my family had planned, then he asked our son to drive his car home, separately from his wife and children.

I protested, knowing how hard it is to drive that far with small children.

He looked at me, told me he had planned this out, our son and his wife were willing, and that he was going to sit beside me on this last drive home.

***

I've had a difficult case of chemo brain, and it hasn't been easy feeling like I have lost parts of me that were valuable.

My body is different.

I no longer dye my hair, giving my body a chance to recover from the overabundance of chemicals it has endured the last couple of years.

He still looks at me like he used to when he sat beside me on that bus.

He tells me it doesn't matter, that in his eyes I am still the strong-willed, strong-bodied girl that he knew over three decades ago.

He says that for the first time in our lives, he has taken care of me - instead of it being the other way around - and he likes to do it.

Many evenings find us sitting together - whether in the garden relaxing with a glass of wine or in our cozy living room or, even in the kitchen now - we are still sitting together.

He has worked hard to usher me back into life, back into living, back into 'being' even though I feel like parts of me are missing.

I hate to go to rooms full of people that know us, as every time I look around at least a third of them are sneaking looks at my chest to see if I wore a bra tonight.  I loathe those looks so much, that I often dress in an old baggy shirt to distract any guessing games with anyone.

If I'm around him, around my family, I don't wear a bra - it's too painful.  They don't care, don't sneak looks - it's just me now, and they accept it like they are professionals at being around people that have lost body parts.

Others, not so much.

He says he doesn't care.  We know why they look, why they are curious, we were curious once as well.  But it doesn't make it any easier.

That's difficult, but more difficult is the parts of my brain that got fried, and don't seem to want to come back.  The stacks of books around our home that I have read and loved, haunt me now.  I can't read more than two paragraphs and have it make sense.

I don't have a running checkbook rolling in my brain any longer.  If you would have asked me our bank balance any given day, any given hour, I could have told you.

Scott called me a couple of months ago when I was staying in Columbus and said "I know you're having a good time with the girls, but you do realize you have spent almost $300?"

My mouth fell open - I had stopped at JoAnne's, eaten lunch out, bought a few lattes, picked up some needed items from Costco - nothing that was over $30 a stop - but it had added up fast, and I had not even been the least bit concerned.

Not until he called did I even think about it.

If you know us, knowing that Scott is now the financially responsible person in our marriage tells you much about where my brain is.

I can't add or subtract or multiply or divide like I did.  I am practicing constantly, and yet it will not hold it's place in my brain - as soon as I am done practicing - it is gone again.

I have what seem to me like large portions of memory missing.  I don't remember my kids childhoods as much.  I don't remember what I watched on tv last week.  It's gone in a way that is different from just not remembering it in a scatter-brained sort of way - it's gone.

I've watched movies twice and not realized it until Scott asks me why I wanted to watch that again.

***

He has a simple faith in a big God that walks him through much of this.  He feels that God gave us each other all those years ago - and that it's our job no matter how difficult the journey - to walk it and to steady each other, lean on each other, and to bolster each other as much as we can.

He thinks God told him that I was going to get through this.  He thinks God has His hand on us now.

He sits beside me and reminds me that I will continue to get better. That one day I will be strong again.

And to be honest with you, I'm not sure if I would be here if he had not been beside me this whole journey.

I say that honestly and with all prejudice and all due respect to my awesome doctors and awesome nurses and awesome treatment plan - I am not totally sure I would be here if it were not for him sitting with me through the whole thing.

That's why I nominate him.  I could fill a volume on his patience, his love, his undying confidence that all will be good, I could tell you all of that, but I tell you the most important - he was there sitting beside me the whole time.


















 

the ten percentile

Almost a year ago, I was sitting with my daughter late one night in the ER at OSU.  She's had several health issues that she is way too young to have, and even though I was in the  middle of my radiation treatments, I volunteered to put on a mask and sit with her so her husband could go home and tuck two scared little girls into bed with a daddy's reassurances that everything was going to be OK.

Only, everything was not going to be ok - life had taken an irreversible turn - again.

She was needing a diagnostic spinal tap to determine why her optic nerve had suddenly gone a little crazy causing her to lose the sight in one eye.

When the very young, and a bit cocky doctor stepped into her ER booth, he explained the procedure to her and I was a bit surprised that they were going to do the spinal tap there - in a booth that smelled of urine and on a bed I was pretty sure was not the epitome of sterile.

I chatted with him a bit, and he didn't have to be a Sherlock Holmes to notice my lack of eyelashes, eyebrows and winter hat covering my hairless head.  I asked him if I could stay in the room during the procedure and he said "of course".

He went over the warnings of possible problems, then glibly said "those never happen, though".  And I told him what Scott and I had determined several years before after hearing several medical professionals stating "wow, we're sorry, that hardly ever happens"....

I told him, only half smiling, while pointing back and forth between Heidi and myself, I told him "you realize, we are the 10%".

The first time he tried to get into her spinal fluid, he couldn't.

I had turned on my "medical-brain", while switching off my "mom-brain" and watched.  I watched as he tried several more times, then I watched her blood pressure dramatically drop, watched her body start dripping with sweat, watched her pass out, and watched the doctor lay her over on her side a little alarmed, and then I watched him abruptly leave the room.

My medical-brain was a bit stunned, a bit pissed at his departure leaving a nurse to clean up his mess, and a bit alarmed that the nurse said he was going to try again.  My mom-brain that had switched itself back on, was feeling the same way.

I know an arrogant-medical-ass when I meet one.

After her blood pressure normalized, and the sheet drenched with sweat was changed, he poked his head back in and said he would try again in an hour.

An hour later, I counted 19 pokes.  Nineteen pokes into her spine.  And those were the ones I counted - I probably started counting at four or five.

I wasn't so sure he was being absolutely sterile - he would poke then pull out and look then poke again.  He was gloved up, but gloves are no more sterile than fingers once they touch non-sterile surfaces.  I wasn't so sure anyone should do that many pokes in ANY spine.  I wasn't so sure he was continuing because he needed the medical test results, or continuing because his ego wouldn't allow him to stop.  

I had to stoop down and sit, because my medical brain was screaming "STOP", and so was my mom-brain.  I was not on top of my game mentally, or I might have spoken out loud.

He finally tapped the spinal fluid, found it to be "good", and left the room.

I hope I never see him again.

I have said this many times, and said it again that night.  I said, "I think you would have received better medical attention at the vet clinic".  I know at least 16 veterinarians that were more careful with needle sticks into a vein, than this medical doctor doing needle sticks into a spine.

And, I know, it would have been more sterile.

***

I want to create a sign for our family to wear into any doctor's offices, hospitals, emergency rooms - it would read something like this "WE ARE THE 10%".

It's not paranoia.  It's happened a few too many times to tape that over the sign.

Knee surgeries, gastro hospitalizations and surgeries, thyroids, lungs, brain tumors, and even cancer.  All of those came with a surprised wry smile and the tag line "this rarely ever happens".....

While Scott was at the Cleveland Clinic, he claimed one even better - he was placed in the "one-percentile" group.

Whatever the reasoning, we have been included in more than a few medical mishaps or mysteries or downright negligence.  

Through it all, we have probably met some of the worst in the medical field, but on the flip side of that coin is the fact that we have also met many of the best in the medical field.

Having that much unwanted experience, has led me to have little patience with the arrogance and negligence that you sometimes run into with the medical field.

It has also allowed me to see the differing reactions to different problems.  Cancer is high alarm.  Cancer is "all guns on deck!"  Cancer is like a locker room before a big football game - everyone is anxious to get into the game and work hard and fight and win.

On the other hand, bring up something like thyroid, or auto-immune, and you will see 92% of anyone in the medical field's eyes glaze over and you know they are counting the minutes before they can abruptly leave the exam room.

As high as cancer is on the alarm scale, auto-immune is that high on the frustration scale.

There hasn't been enough research on it, there hasn't been enough teaching in medical schools about it, there hasn't been enough tests to find it and tag it, and cure it.

When the words auto-immune come up, doctors just seem to want to roll up in the fetal position for a while.  They know this patient is never going be an easy diagnose - dose - cure patient.

I've dealt with auto-immune issues, and sadly, my daughter has had to deal with auto-immune that has had alarming and scary side effects.

And now, the deepest of griefs, her daughter as well is dealing with it all.  She is much, much too young.

If you say the words "inflamed optic nerve" in my hearing, I usually immediately sit down, because in my experience, hearing those words has been followed by the words "brain tumor" or "lost vision in one eye" in one I love more than my own life.

I got the phone call yesterday, that one so, so young, had been given those same words.  The dreaded words "inflamed optic nerve" were used in a sentence with her name attached.

My sweet granddaughter has been to the doctor too many times already.  She has been misdiagnosed too many times already.  She has had to endure tests that she didn't understand too many times.

She fights savagely after stepping through the threshold of any doctor's office.   I've been told she has a mean exam-table-reaction-kick that can render male doctors childless.

She is already on a extremely careful diet that causes her to eat her carefully packed lunch almost alone at a secluded table at school.  She knows what she can and cannot eat, and turns down birthday cupcakes, Halloween candy, McDonald's chicken nuggets regularly.

She sits at a special desk that has an ear piece in her classroom so she can hear the teacher.  She hid in her closet and cried the first day of school this year - she was afraid the other kids would be mean to her.

She's an over-comer that one, though.  Her teacher says that she is a leader in her class and well-liked.  She's kind and empathetic to her core but will come out fighting when she sees injustice.

She has been told that she can't do soccer - which she loved.  The same girl that worked so hard to be able to grab across the monkey bars at the park was told she can't do any sports where her head may be injured.  She has been told she can't eat more than half of what most kids love.  She has been told she has to endure test after test after test.

And she is still the sunniest, happiest kid.

She has been listening to Anne of Green Gables lately, and when I stayed with them recently and we were alone, she asked me sadly one day if I "had a life-long sorrow"?  Anne of Green Gables claims that her life-long sorrow was to endure her red hair.  Addy clamped onto that idea and has been obviously turning that question over in her brain.  When she asked me - I wanted to cry - how could I tell her that my lifelong sorrow was to see her or anyone that I love, suffer?

***

When Addy's mum called me yesterday after her eye appointment, and said the words "inflamed optic nerve" attached to her name - I immediately cried out to God.  No!  No!  Please, God, No!

I laid awake almost all night, praying.  Praying.  Crying out to the God of the universe that created our smallest cellular structure - I prayed that God would move in that young girl's cellular makeup.

For those that don't know, an inflamed optic nerve can mean a few things - many times it's a precursor to MS.  In the case of our daughter, it pointed to a brain tumor.  Then at a later date, it caused her to lose sight in one eye.

I grieved that deeply.  Heidi has lost so much - her health, half of her sight, half of her hearing, her vigor during youthful years, and her symptoms rarely give her rest.

We are so thankful for good doctors that have diagnosed her accurately after years of missed diagnosis, but so grieve the loss of what should be the strongest, healthiest years of her life.

She handles it all well, but as parents, we don't want her to have to 'handle' anything.

After all that, when I got the call yesterday after Addy's eye appointment, I fell down before God.

We were all scared, because it hasn't turned out so well previously.

***

Germans are an odd breed of people.  At best, they have the most orderly, most perfect lawns and gardens.  At worst, they are distinctively distant, untouching, unflinching, unloving.  In the prior century of world history, they wreaked unnecessary havoc, and that list of attributes helped them claim the award for the most atrocious war crimes known to mankind.

Some historians note that the ancient Romans used the brutal shoulder-length-blond-germanic-mercenaries in the Galilean area before the time of Jesus.

Eye doctors tell us today, that those with german heritage sometimes have chronic inflamed optic nerves.  Chronic inflamed optic nerves that do not break with MS in a year.  Chronic inflamed optic nerves that could or could not cause problems later.  Chronic inflamed optic nerves that need to be pampered a bit to keep them from causing headaches or becoming more inflamed.

In the big scheme of things, hearing that a wee loved one has a "chronic inflamed optic nerve" is the best news we could have heard this morning.

The best of the worst news ever.

And we pray, that in her lifetime there will be answers and help on how to relieve this problem without dire consequences.  We pray for a complete healing for her.

She has had to learn to "live suffering" way too early.

I pray that the medical field will grow and enlarge in it's efforts to combat and cure auto-immune disorders.

In the meantime, I have a first hand, first grade example of how to deal with medical problems that just won't go away.

She's pretty awesome, that Addy-girl.

Destroyed. (but it's a good birthday to be alive)

Today is my birthday.

Yesterday I just sat on my couch and cried and cried.

It's the weirdest thing - the tears just pop out.  

It's happened a couple of times recently.  I keep flashing back to last year - it's not like I am just remembering - but it's interruptive flashes of "views" of my life last year popping up at the oddest times.

At least the parts I remember.

Last week I had a doctors appointment - again - and as I was driving on the interstate I was trying my best not to get distracted and end up going the wrong way on the wrong exit *again*, and yet I couldn't help but notice the beauty of the sunshine on the trees that have finally turned color here in my part of Ohio, and suddenly there were tears on my cheeks.

I was surprised and frustrated - I was planning on 'rewarding' myself for my doctor's appointment as I normally do and stop in at a Starbucks - and I couldn't do that very well with smeared mascara.

But the tears were there, I couldn't stop them, and I didn't know why they just popped out.

Then it hit me.  A few times this fall I've had weird reactions to weird things, and it's like a flashback that I cannot explain to anyone.

This formula starting working out of my brain from somewhere:  sunny fall day + beautiful changing leaves + interstate + comfy car = long drives home from chemo treatments.

Long drive home from chemo treatments = long, long, lonely days in bed trying to recover.

Even if I don't remember, my brain somehow does.

My sister from Oregon visits annually to care for my mother for three weeks every year in September for her birthday.  Every time I thought of it in August, I had a huge hit of anxiety.

It's not what you think - my sister is a pleasure to be around.  I could not, could not for the life of me figure out why I was so dreading the first week of September - and then it hit me - last September 7th, I started another round of chemo for three months.

I thought they might truly kill me with the last go around.

My last round of chemo was called "AC" and I remember telling the nurse going over the booklet with me that "after six months of weekly doses of three chemos - one of those chemos being taken for three days each week - this one can't be that bad, right?"

I remember her looking at me sideways.

All year I have been flashing back to last year in disjointed, odd bits of memory, but this fall has been a little worse.  It's been flashbacks of laying in bed for days on end.  It's been flashbacks of my throat and trachea and lungs hurting so bad.

The last rounds of chemo were given every three weeks, and after the first one I thought "hey, not so bad".  Then a few days later my mouth broke out in sores, my esophagus felt like it had open sores the whole way down, my gastro-track considered permanently packing up and leaving, and there was a thrush-like rash all over my throat and mouth inside and out.

I could barely brush my teeth it hurt so bad.  Which is saying a lot because I was brushing my teeth about, oh, say at least five times a day during the last chemo to get the nasty taste out of my mouth.

They fixed me up with antibiotics, gave me a numbing mouthwash which they told me to not only use as a mouthwash but also to swallow so it could numb my trachea, enabling me to keep eating, and it got better after ten days.

I wasn't all that crazy about getting into the car for that second round of chemo baptism.

The second treatment knocked me down a bit more, but I was thinking 'still not the worst anyways'.  Then I got bronchitis with a cough that felt like someone was using a baby bottle brush on my yet unhealed esophagus every time I breathed.  They put me on antibiotics again, I eventually climbed out of bed and recovered, but I was pretty sure I was not going to walk into that center again for my third of four treatments.

Every time I thought about it, I shuddered.  Every time someone might mention it, my insides shrank back and I couldn't eat for a bit.

I walked through the door for the third treatment and my chemo nurses were like "you've had a hard time of it Karen" - so I'm guessing I looked just like I felt. ** (see below)

I can't remember when my red blood cells tanked so far that I needed another blood transfusion.  I can't remember the total depths of my despair although I remember well my dread of that third and fourth treatment.  I can't remember some of the drives to and from the treatment center, but warm sunshine in the same car with beautifully colored leaves makes my brain trigger enough to remember it.

So today, as I sat on the couch and Scott asked me one more time what I wanted to do for my birthday and I told him one more time, "this just feels good to me, just being here with you and not being sick", the tears started again.

My brain remembered very well that my birthday weekend last year was the last of my four dreaded chemo treatments.  I don't remember it all, but I think I crawled into bed for four days and didn't move much.

I remember parts of the slow crawl back to trying to regain some strength after my body was reeling from nine months of chemo with a surgery in between it all somewhere.  I remember the slow crawl back to trying to feel better and breathe deeply again.  I remember slowly regaining and rebuilding my red blood cells.  A huge victory a month later was being able to climb the stairs without stopping to sit down and rest at the top.

It took a good three weeks to recover enough that I didn't look and smell and feel like death, but for months afterward every time someone said the word "chemo", my body would involuntarily shudder.

I think back to that summery-hot day when my dear oncologist told me that she wanted to do the follow-up three-month round of chemo, and I was smitten, but I also thought, and even said out loud often "I can do anything for three months".

Those words don't trip out of my mouth anymore.

Looking back today, I was amazed how much Scott remembered that I didn't.  I couldn't remember who my last chemo nurse was, then he reminded me that it was my dearest favorite, Abby, my first chemo nurse at the Stephanie Spielman Center when I switched there after the James was done with my initial first five weeks of the experimental drug study.  Abby was the first nurse to give me my chemo treatment when I switched to the center in February of 2012.

Then, she was the last to administer it later that year in November.

I didn't remember that until Scott started prompting my brain a little, and reminded me of the hand sewn quilt they gave me, and reminded me of Abby's words.

She was young enough to be my daughter but she always called me "sweet Karen".

And then I shuddered again today.

I shudder every time I think on the months that I was literally destroyed to within two breaths of my life.

I don't remember it all very clearly so much, but my brain obviously does.

***

I've had several appointments the past couple of months.  I had a spot on my 5th rib, sternum side, show up twice on follow up CT scans, and I was supposed to have another CT scan three months after the last one in August.

My brain and body did not want to do it.  I know what the OSHA manual says about over-exposure to radiation.  I know each CT scan is equivalent to 250 chest X-rays.  I know you do not shed radiation.

I vainly thought I skipped through my radiation treatments the first two months of this year with little fallout, only to immediately afterward be veiled heavily within a shrouded fog that held me tight for months.

I wasn't able to think well.  I was extremely and easily fatigued.  Did I mention I wasn't able to think well?....... The fallout from radiation slammed me hard.

Late last summer I could feel myself start to climb out of the deep pit of fog and veils and start to feel more energy.  I didn't feel like I was moving clouds of mist every time I tried to do something.

But my brain didn't seem to want to catch up.

A month ago I had a follow up appointment with my radiation-oncologist, and met with her 'fellow' first.  I was one of that fellow's first patients when she started in February, my last couple of weeks of radiation, and she remembered me and took some time to catch up with me.

We went over my lingering pain.  We went over my status of 'barbecued ribs', and the pain and soreness that radiation leaves behind in your muscle and cartilage for months and years.

We went over my last bone scan and subsequent CT.

We talked about the bone spot.

I told her that I had worked that out somewhat in my mind.

Having that *spot* that wasn't a fracture, wasn't arthritis, wasn't anything they could identify - having that left to hang over my head, not knowing if it would grow or disappear, if it would throw me back into chemo for the rest of my life or I would walk out from that scan breathing a deep, deep prayer of thanks - it took a little work and a lot of prayer to get to a point of acceptance and 'knowing'.  

Knowing you might escape, or knowing you might be imprisoned for the rest of your life.  Knowing you might get a good result because of a new chemo-drug test you volunteered for, or knowing that all the extra pain and suffering didn't do you any good.  Knowing that if not this time, you stand a good realistic chance of it being next time.

The elation of beating cancer was greatly tempered this past spring and summer with the knowledge that I am high risk for recurrence, and then the ever pervading knowledge that there is a damned spot on my bone that they "are watching".

It all took a while to work out in my brain.

You have to or you curl up in bed and don't live your life given to you.

Then one of my favorite doctors ever, Dr. W., came in and did her exam.  I told her I didn't want to do another CT scan.  I told her I thought I was allergic to radiation - that it made me sick for a week after every scan.  I told her that if the "spot" ended up being nothing, I would not survive all the extra radiation given me now.

She looked at me for a minute, uncrossed her arms and said "Karen, I wouldn't worry about it."

She really did.

She continued, "And I certainly would not be doing CT scans any closer than six months".

"Period".

She told me she had looked hard at my scans and that she saw what the radiologist and my oncologist were seeing, but that in her thinking, she wouldn't have me worrying about it.

Big sigh.

Big sigh followed by a lot of questions I didn't think to ask her until I was three hours out driving home.

I met with my oncologist a few weeks later and we talked it over.  She laughed nervously when I told her I didn't know if I was brave enough to tell her I didn't want to do the three month follow up scan.

She considered it all and told me that Dr. W. was an expert in the field of radiology, and we would follow her lead.

We will wait until January to do the follow up scan.

***

All of my appointments the last two months have gone the same way - we talked about my swelling, my limitations, my bone bumps, all that I can talk about rather easily.

We talk rather seriously about the darned spot showing up on my 5th rib that is too small to biopsy.

All that is 'process-able' now.

Then we talked about my brain recovery and tears are immediately in my eyes.  I tell them I can't deal with this.  I can deal with all the rest that cancer and the subsequent treatment had done to me, but I can't deal with the brain-loss issues.

I'm tired of feeling overwhelmed.  Overwhelmed everywhere that I am planted for more than 34 minutes.  Overwhelmed in a store to the point that I have to leave and sit in the car for a while. Overwhelmed anytime there is more than one distraction to look at, listen to, react to.

I seem to have acquired a severe case of ADD.

I'm tired of having big gaps in my memory, big gaps in my math skills, big gaps in my reading cognition.

I told her I wasn't *smart* anymore, and then I started to cry.

I now know what those kids in elementary school felt like that had difficulty reading.  I used to love doing speed-reading tests, and being one of the first ones to slam my book shut loudly because not only was I done, but I could answer all the questions - I had the cognitive skills to speed-read and understand it all.

I could never beat a couple of my friends that were even faster, but I never had any issue with reading. I'm a ferocious reader, and retain lots.

Or at least I used to.

Now I don't.  I can't read more than two paragraphs without losing focus and understanding what I am reading.

Two paragraphs is an improvement - I couldn't read one paragraph in May.

If I open up an article to read it, I have learned to read the first paragraph and scan the rest - otherwise it's a long process of reading, leaving, reading a little more, forgetting, reading, forgetting and the frustration of it all just makes it mostly unpleasant.

A friend of mine just published her cancer experiences, and she said I should look into publishing my own blog posts.  I couldn't tell her that I can't stand to read my old blog posts.  I can't read more than a few paragraphs before I lose focus, and this is stuff that is me - it's my words - and yet I still can't do it.

***

The doctor I saw last week told me it was just going to take more time.

He patiently listened to me tell him my biggest fear - I'm not all there.  Twice I have watched a DVRed show with Scott, then argued with him later in the week when I turn it back on again and he says "we watched that".  I tell him we didn't, I keep telling him all through the show we didn't watch it, and then at the very end some phrase will pop up that makes me realize we maybe had watched it before.

I do not remember anything - anything about it until some phrase at the very end.

That chills me to my core.

But it has made watching old movies and reruns much more bearable.

If you visit us at our home, you may want to double check any dishes on which we serve you food.  I am keeping track after the second time, but for three time - three times - I have put away dirty dishes out of the dishwasher.

Think on that a minute.  After the first time, you kind of learn to double check the detergent thingy, wouldn't you think?  The second time, you just should realize the dishes are not looking all that sparkly and your brain should make a connection like "hey - isn't this what happened before??"

The third time, you just sit down in a heap when you realize it eight hours later.

I have left food in the oven and not remembered it until I smell something awful when turning on the oven again a week later.

I've had some epic disasters in the kitchen, the latest being ruining a 4 pound beef roast that Scott had planned our meals around for a week.  I can't cook or follow a recipe to save my life.  I finally turned out a decent meal last week and I thought Scott was going to sit down and weep.  It's been almost two years since I've had any kitchen experiences that were noteworthy.

Lucille Ball had more culinary success.

I decided to do a little cleaning, so I put some vinegar water into a kettle, and as I'm washing off surfaces, threw in some coins off of the top of the dryer that had detergent all over them thinking myself quite brilliant to soak off the detergent and clean them all in one process.  Then, I promptly poured it all down the garbage disposal two hours later.  Scott pulled out enough money to pay for three school lunches.

Everyone says they do the same thing.  It's just fast acting chemo-induce-menopause.  It's just getting older.  It's just human.

But it's not the same.  There's a hole there that feels completely different.

My doctor says my nerve endings are fried some from chemo and it will just take time for my brain to form new patterns, new connections.

My brain does not seem to be anyways interested in being an over-achiever with this feat it's supposed to be accomplishing.

He asked me a question - he said "do you realize you have used the word 'forced' twice in the last five minutes in relation to your brain recovery?"

He said you cannot, cannot force it.

Then I really started to cry and he handed me a tissue.

***

I have a new job.

I cried for two weeks when I had to give up my job that had been held open for me for well over a year, in May.

Honestly, it was three weeks.  I had little idea how much of my identity was wrapped up in my employment.

So, the beginning of this school year I have three granddaughters that are now officially first graders.  And the ones that live closest, needed reading volunteers for their class.

I raised my hand.

For an hour or so every Monday morning I go up to the school and listen to first graders come out to the hall and sit with me for a few minutes and read their books.  I jump out of bed on Monday morning at 6am and yell to Scott - "I have to get ready for my job!!"

It's a great gig.  I love it.

And the books they are reading.  I don't think those were required books until I was in the third grade.  There's none of that "see Spot run" in these first grade classes - there are some words I have to think a moment to sound out when reading them sideways.

I have to admit - I am looking over their shoulder and noting their learning process.  I am watching and listening to their math skills.  We sing-song count by fives and tens and twos every Monday morning when driving to school.

I am reminded that learning, or re-learning, is a layering process.  And it can't jump from first grade to fifth grade in a month.

It can't be forced.

I have started to crochet.  The feeling of your brain making your hands work is wonderful.  I have pulled out and remade more doll dresses than I care to count.  If you were to walk in my front door any given day, you might find me in a pile of yarn yanked out because the stitches were miscounted like 18 rows before.

But I keep doing it, keep working it, and the hand-brain connection seems to help.

At least it seems to be helping more than *luminosity* did.

***

I have thought about something I wrote down like two decades ago:  "a change of clothes does not make a changed person".

So many times in my Christian communities I have been involved in, I have noticed that people come to a Savior that they see as wonderful, healing, helpful, life changing - they see all the glory all the love all the ideals of the Kingdom of God on earth and they are so happy to finally found a *home* for their soul if you will.

Then, they seem to forget all that and accept that yeah, Jesus was great and can do great things, but they stop there and never fully change their persons.  Change their makeup.  Change their drive.  Change their ideals.

Change their core being.

If they had issues with strong or smart women before meeting Jesus, they can find a group within the church to hang out with that tells them how to do that even better and silence women.

If they dealt with the horrors of sexual abuse before meeting Jesus, they run to Him with arms open wide knowing they just found what they had been lacking in their deepest of souls.  But later, when the weeding out and the healing get to be too cumbersome, and others in the church are just downright non-supportive, it gets laid aside, and instead of becoming a new being, a new 'temple', they are merely taught to put on a set of new clothes, trying to cover up the old with something new, instead of being encouraged and helped to become 'new'.

If they dealt with pride or anger or bossiness or shyness -- everything that they dealt with before can be easily and adequately covered over in the church with new clothes.

Yet, God seems to want something different.

It seems too often instead of starting something new and beautiful and building on it layer by layer, we too easily grab onto the easiest form of reformation - or rebuilding - we find a new set of clothes that fit and make believe we have truly become new, when we haven't.  We just look better, but it's still the same crap inside.

SSDD.  That's what the world calls it.  (If you have to ask what that means, go work in an office for a while.)

I have been chewing over a study I was looking at a couple of weeks ago.  It was talking about Abraham sending his servant, Eliezer, to find a wife for his son Isaac.  The writer states that Abraham had a strong faith, but his servant did not.  I had never thought that when reading the passage before, but went with it a little.

Eliezer seemed to think it impossible to fulfill his master's request, but Abraham promised that God would "happen" in this situation to make Eliezer's journey successful.

And here, I will let Rabbi Baruch tell the rest of the story:

"When Eliezer arrived at his destination, he beheld God’s choice for Isaac, Rebecca. The words of the Torah are most unusual when describing Eliezer’s reaction to seeing Rebecca.

“And the man is destroyed by her, made silent to know whether HaShem made his journey successful or not.” Genesis 24:21

Read this verse in your Bible and you will notice a significant difference. The first verb is usually rendered as “look steadfastly at her” or “was astonished by her“. The word however, literally means “to bring to destruction“, as demonstrated by its usage in Isaiah 6:11, where the verb is translated, “until the cities are laid waste“. The question that needs to be asked is simply, “what are the implications of the verse stating that Rebecca destroyed Eliezer?”

It has already been mentioned that Eliezer was not a man of faith. In other words, he doubted that Abraham’s command to travel to a distant city and find a woman who would leave her family, friends, and familiar surroundings to marry a man that she did not know or had even seen was going to be realized. Despite Eliezer’s lack of faith, he nevertheless prayed to the God of Abraham (see verse 12) that if HaShem did exist, then He should make clear to him who the right woman is. Eliezer even had a test to confirm whether God answered his prayer. Not only did Rebecca do exactly as Eliezer prayed, the text states that she, by her behavior, “destroyed” Eliezer. The intent of the verse is that Eliezer became a new man, a man of faith!

The message of this text is that Jesus does not want to change you, but destroy you and make you a new man! This is why Paul said, “If anyone should be in the Jesus, he becomes a new creation….” (See 2 Cor. 5:17). Even if you are a believer in Jesus, there are still things that God wants to destroy in your life so that you truly reflect the newness of Kingdom life. You may need to step out in faith like Eliezer did and serve your master, the Lord Yeshua, in order to see the changes that He wants to bring into your life. Be aware that God does not remodel, He builds on a new foundation.

I connected strongly to this in that I feel that I have been completely destroyed the past two years.  Not only has my body been laid low and wasted, my thinking is not the same.  I am not the same person in a lot of ways.  In most ways.  And yet, when all is lost, when I am destroyed, there is hope that God can use this, build this into something.

I struggle with the building as much as I struggled with the destroying.

***

I cannot write this without saying how incredibly blessed I am.  Destroyed, but blessed.

God has laid His hand on me, and walked by me, and is layering upon the brand new foundation new things.  I still awake every morning and bless Him for being alive.  I bless God for breathing into me the breath of life each day.

It's not something I take for granted now.

Maybe us-peoples walking through cancer-land understand the walk through the fire a little deeper than others, maybe we might understand being 'rended apart' a little deeper than others, I don't know, that might all be up for debate.

But what we might really know well, is being 'destroyed'.  It's pretty difficult to walk through almost two years of diagnosis, treatment and recovery and not especially know about being 'destroyed'.

To be destroyed, and to be less in many areas - yet to feel so blessed and so full for life and so open to life now is beyond me to describe or to detail, but it's true.

I have been destroyed, yet layer by layer God builds and gives and helps and heals and binds.

And makes me so incredibly happy to be here to celebrate this birthday.





**This is a link to the post for the miraculous things that happened that week before my third treatment - I had to look it up - I couldn't remember it all..... http://hiddenplacessongsofdeliverance.blogspot.com/2012/11/priestly-visits.html  (but, I will never forget the trip with Polly, the woman who sought me out and breathed on me the courage to continue.)