The Chattering

It has always amazed me after every blog post, the outpouring of phone calls, emails, messages, notes and just plain love.  Some folks, like me, are very private and don't respond online.  Others, respond openly and beautifully.

Sometimes, when I put up a 'painful' post - a post that is not about overcoming, a post that portrays the pain one feels at times - I doubt myself and consider taking it down like fifteen times throughout the night.  I almost did this last one.

Then, we got a couple of phone calls this morning.

Cancer isn't the only suffering going on in the world.  I don't have to watch my baby have thirty seizures in one day and look at painful choices to remedy it.  I don't have to sit in a prison cell and grieve myself and my family over wrongs I did to society.  I don't have to wonder about my husband's fidelity.  I don't have to put on a prosthetic leg and arm when I go out, like so many of our returning soldiers do.  I don't have searing pain where my children are concerned - they have problems like everyone - but I'm not having to post bail for them or visit them in rehab.

There's a lot of pain in the world, a lot of suffering, and what I have come to conclude about it all is that Christians don't do pain and suffering very well.

Over three decades ago I was introduced to two books that changed my world view.  One was John Bunyun's "Pilgrim's Progress".  The other was "Hind's Feet in High Places".  Both books take a fledgling soul and start them on a journey.

In my early twenties, I started to look at my life in that manner - I am on a journey.  I am walking a path that sometimes is broad and green and warm and pleasant, and sometimes I am on a path that is fraught with peril and storms and lightening flashes all around, and I have no protection from it.

It changed my whole view on life.

In John Bunyun's book, there were off-streets along the way, and the journey was mostly alone except for times of trouble when there were those leading you into harm's way, and those leading you out.

In Hind's Feet, the journey was to the top of a tall mountain and the life lessons, heart lessons, soul lessons learned along the way.

Both of those books so hugely important to Christians for decades and decades, reflect pain and suffering.

That tells me one thing - the idea that you shouldn't deal with pain and suffering is relatively new on the Christian scene.

Maybe a couple of decades of living with the gospel of "Positive Thinking" impacted us more than we like to admit.  Maybe a couple of decades of sinking into the "Prosperity Gospel" has painted our wagons a different color - I don't know.  

Maybe the Power of Positive Thinking and the Prosperity Gospel ideas were a backlash against generations of Christians being a little too snug and content in their misery.  Again, I don't know.

All I know, is that Christians say the damnedest things.

Especially when you hurt deep inside.

Things like "just don't think about it".  Or, "God doesn't give you more than you can handle". And some of the best "well at least it wasn't as bad as you thought"...... huh?  How bad does bad have to go to get a sympathetic ear at times?

Anytime the words "malignant neoplasm" are clumped together in a phone call from my doctor or on "My Chart" web page, my insides shrink a little and tears come to my eyes.  Words put into phrases like "observation for suspected malignant neoplasm"  hits hard in the mid-section of your body.

As I process all of those words, I need some time.  I need a sympathetic hug.  I need a sympathetic ear.

I don't need preaching.  I don't need to hear what God taught you thirty years ago and you have nothing to compare to suffering since then and cannot relate.  I don't need to hear comparisons - like well "at least you aren't losing your leg".  Or, "at least you are still alive".  That might help later, but when you've been body slammed in the depths of the valley, comparisons don't help.

I don't need to hear what you want it to be.  Like, if a doctor gives you points A, B and C - and if "A" is the worst case scenario and "C" the best case scenario, don't just talk to me about "C".  My brain doesn't work that way.  I have to logically think through the worst case scenario, the best case scenario, and where I might land, and then my brain has to decide what is the best way to proceed from there.

Sometimes, there are few if any positives.

Sometimes you have to wade through a lot of negatives and weigh out which one is best.  After you process that, then God can start to open the door for blessing - or positives - but when seeking out answers being constantly reminded to "look at the positive" doesn't do anything.

If Madame Curry had only looked at the positives, we wouldn't have the discovery that radiation was bad, but also good and could be used to kill cancer cells. If Selman Waksman didn't discover that a nasty fungus could produce a powerful antibiotic, most of our ancestors that fought in WWII would not have produced us.  Who knew nasty molds make brilliant antibiotics?  So, yeah, we all know that we have to look at the nasty stuff and eventually it can be turned into good, but you do have to look at the nasty stuff.  You do.

It's not about the glass being half empty.  I am amazed how much Christians say they hate modern day psychology, but quote it nonetheless.

I'm guessing it's because they watch Dr. Phil a lot more than they listen to or read their Bibles.

And maybe this is what this all boils down to:  if we knew our Bibles, we would know what to do in the face of pain and suffering.

Jeremiah cried out to God when thrown into a muddy pit for his prophecies.  Just a hint - if you don't diss Jeremiah for crying out, don't diss the people under the umbrella of suffering now.

David covered himself in ashes and fasted and wept and prayed to God when he knew that his new baby was going to die.  Jesus went off to pray in a lonely place.  And duly note please, that he sweat drops of blood and wept when praying in the face of suffering.

Why does the Bible note that God catches each one of our tears?  That's one of the most tender, touching things to my soul and I visualize that when I allow myself the grieving.

And if the notes and emails and phone calls are any indication, I'm not the only one feeling very alone in the midst of Christians telling me how to handle it all.

***

I think I should have done what I originally intended to do after the long day of CT scan, waiting, drinking water, waiting, drinking more water, and wait some more.

I intended to fast and pray and not "connect" until my soul was in a better place.  I intended to grieve whatever it would be, alone with God and process it until I could talk about it.

Good intentions pave the road to Hell my mother always said.  (that's not in the Bible in case you wonder)

I fell asleep after we got home that night, then Scott woke me up around 9:00 and said "everyone wants to know what the results were - you need to type something."

That, my friends, just made me mad.

First of all, no one would even know that I had results yet.  Secondly, it was late at night - at least for me - really?  I have to let them know now, really?  I know better than to type when I'm mad.

I was already pissy because I just didn't like the results.  I knew I needed time to process it all.

Or let me say this another way - I knew I needed time to collect my thoughts before I could handle all of the lame "Christianese" thrown my way.

Sorry.  But I was told this week that I needed to be more honest here, so honest it is.

I say this knowing that the wrong people will get the wrong messages here.  A lot of people have been so kind, so caring, so supportive throughout all of this.  And I know a lot of people just don't know what to say, and this will probably reinforce that thinking, making them never say anything again.

I'm not talking to you.

For those of you that have been so kind, stop reading here.  The rest, let me skool you.

And I 'skool' you for one reason only - I'm not the only one hurting.  The others just don't blog about it.

When anyone is suffering there are all different levels, all different processes, all different types.  My simple advice is this:  Do NOT respond until you know what level, know the type and know where the person is at in the process of suffering.

You find that out by asking two questions:  "How are you doing with this?"  And then you ask "What do you need?"

Really.  It's that easy.

Those two questions clue you into exactly what your response should be.  Sometimes my responses to the first question have been "I can't quit crying".  Or, "I'm numb".  Or, "I'm over the initial shock, I'm processing".

And then, what do I need?  I need a hug.  And please know, I'm not a hugger, but that has been my most surprising response at times.  I need you to hand me kleenex while I sit here and cry.  I need you to just sit and grieve it with me.  I need you to remind me that I can be strong in this weakness.  I need you to remind me to keep in the fight.  I need you to remind me that God is close.  I need you to massage my hurt soul and spirit and help it stay on the journey.

My most recent response surprised even me - I need you to listen to me rant for thirty-five minutes so I can get this anger out and move on.  I don't believe in ranting, but boy can I do it well. I know it's the fastest way for my personality type to process - get the ugly out then I can look at the facts.

I have not been angry this whole entire side road journey of cancer-land.  Not because I am so immune to it, but I think it's because I have had to deal with hideous things before, I know the grieving process, I learned how to do suffering a little already, and I learned a long time ago it doesn't help to get so angry that you cannot proceed.

But when my daughter called and asked me that afternoon if I had any results yet, I said "No, and I'm just so pissed about it all".

And I was surprised - where did that come from?

My journey the last six months has been all about accepting my limitations, and I haven't been very happy about being *limited*.

And you can't talk about it.  Because it makes one sound damned ungrateful if one says "I'm alive, but I'm pissed I can't work in the garden".  Or, "I'm alive, but I can't eat carbs and not get sick, and I have a limited diet that I'm not ok with yet".  Or, "I'm alive, but I am constantly aware that I cannot lift anything or do work for more than an hour or get stung or cut myself, because if I do my lymph-gland-lacking-body goes all crazy and my left side swells up".

And the most difficult, "I'm alive, but I don't know when my brain will come back so I can sit in a group and talk and think with you all".

So when I finally said out-loud, "yeah, it's pissing me off", I should not have been surprised, but I was.

(oh yes.  Mommy has a potty-mouth when she's dealing with anger....)

***

So, all that brings us to the results of the CT scan.

I didn't want it to work out this way, but because Scott insisted on going with me Monday, we had to get home early because he had to go to work the next day.  I knew why he wanted to go, but I wanted the day to look differently.

A while ago I had set up two days with my daughter Kristi to care for Baby Bird - that Monday and Tuesday.  I had hoped to squeeze in a little Millie-Bean time on her birthday as well.  I was so pleased to be able to feel well enough to spend the time with her, and also viewed it as a way that I could possibly help maybe 'payback' Kristi and her husband a little for all the open hospitality they had given us over the last almost two years while I was in Columbus getting treatments.

The CT scan scheduling kind of messed up those two days for a lot of people.

While we were waiting that afternoon for the callback from my doctor, we ate out, shopped with utmost lackluster, and then stopped in at Kristi's.

No phone call.  We left there intending to stop in and see the birthday girl on the way home and I kind of thought I would not be getting a phone call that day after all.

While celebrating and playing a little, my phone rang.

I walked into a bedroom, closed the door and chatted a little with Dr. Mrozik.  The door burst open and two girls trying to find their best doll-playing-partner barged in and as Heidi gathered them up, ushering them back out she looked at me and made the thumbs-up or thumbs-down gesture, wanting to know which way the call was going.

I turned my thumb sideways.  It wasn't the good news I was hoping for, but it wasn't the bad news of going back into chemo.  Yet.

Dr. M said it's not a fracture.  That's what I think my logical brain was wanting her to say.

It's not inflammation as it is not in the soft tissue.

It's not arthritis, which was my last hope.

It's too small to biopsy right now.  She said her concern of course was that it was a malignant neoplasm which kind of makes my blood run a little cold every time I hear those words.  Especially, when she is looking at the rib bone at the sternum.  The scar area is where most cancers of this type recur the most.  And judging by the way she examines that area, I'm guessing she has seen that happen more than once.

I know all the medical come-backs - I know she has to be extra safe.  I know she has to be extra concerned.  But the bottom line is that there is a bump inside my bone that she has to be "extra-safe" about.

I go back in three months for another scan.

***

Sometimes, doctors make verbal slip-ups and don't really realize what they just told you.  Two come to mind when dealing with this - one was my radiologist oncologist asking me why I was balking so much at doing radiation.  I told her that I knew radiation comes back around and bites you in the ass in twenty years.

She told me, "let's not worry so much about the twenty years, and just get you to four years".

Ok.

The other comment was from my oncologist when we were worried after the first bone scan about another spot and she told me she didn't like her patients to have bone scans closer together than five months.

Now we are going every three months.

***

While I am raging and ranting, I keep coming back to one of my favorite soap boxes:  the north american church has dropped the ball on so many things.

I'm sorry - I know a lot of you are pastors, teachers, believers and I mean you no disrespect.  But I can't help but feel like with all of the work being poured into the church, we are missing some things.

I believe that if the North Amercian church was doing it's job properly, biblically, we would be leading the world in the field of psychology.  Why we have walked away with the idea that our psyche or soul or spirit - call it what you want - are all disconnected I don't know.  Just reading a few Psalms tells you differently.

Instead of telling believers that God gave you a Sabbath rest and you are to do nothing, worry about nothing, just rest your body, soul and mind, they have to go to a psychologist that tells them their minds, bodies and souls need a *rest*.  A psychologist tells people to "rest" once a week.  They are teaching what the church should be teaching.

The same goes for meditation.  Just bringing up the word in some church circles causes a sharp intake of breath and fear grips some faces.

I don't get it - the word meditate shows up in the Bible at least more than a few times.

Are we so afraid of "middle eastern thinking" that we immediately throw the proverbial baby out with the bathwater?  Or in this case, the soul out with the mind?

I've been searching for God while in the midst of all my recent angst.  I've walked the journey long enough with God to learn that you don't walk away from Him of all things when you grieve.  Or when you get angry.  Or when you are weary.

You walk to Him, with Him.  You talk it out, angst it out.  It's like a thunder storm that clears and calms the air and makes it sweet to breathe again.

Well meaning people have told me that you are not supposed to question God.  Really?  Because I think I read about Abraham doing something crazy like asking God again and again if he would just please reconsider Sodom and Gomorrah.

So as I was asking God for wisdom to know which way to go a couple of months ago, asking Him for help, for guidance, for light on this journey, I searched in my car for a CD I had misplaced.  One of many things that I have *misplaced* the past several months.  Instead of the CD, I found one with a hand written title called "Sounds of the Eternal".

I put it in.  I listened a bit.  It was scripture reading, some meditations, and then a simple song would go on and on and again on and on.

I kind of liked it, but popped it out.  You can only listen to one-liner songs for so long.

The next trip, I popped it in again.

I listened to the whole thing.  I now have five simple songs memorized that come back to me often.

It occurred to me suddenly on one long trip, that this was what I had been looking for literally for years and years - a Biblical meditation CD.

You just don't find many of those things.  Because maybe, just maybe it's a psychologist just messing with your mind.  Or maybe it is just too closely tied to 'middle east thinking' and we certainly want to steer clear of that heresy with our basic, more holy western thinking that comes from the Greek.  Because we want to think like Greeks instead of Hebrews for heaven's sake.   (that was sarcasm in case you missed it)

We have tried to be so aware, so alert of Satan *sneaking* in somewhere, that we cannot see the help that God put right into our hands and souls when we need the help the most while suffering.

That simple help of turning to Him.  One of the songs says "I will show you hidden things, hidden things you have not known".

It sings that like maybe 83 times.  But it's now embedded in my mind and it comes as words from God time and time again.

Another song says "Let me hear, let me hear what You will speak, when I turn to You in my heart."  I wake up with those words going over and over in my mind, and I pray them.

A few weeks ago on tv, I was flipping through the channels as tv bores me greatly, and landed on an interview with a famous meditationist.  (that's my own word, and I cannot remember the guys name, sorry.)

But he was by no means a Christian.  Because in America you cannot "transcend" and sit in church pews.

But I leaned in with fascination as I listened to what he said.  He talked about being in his twenties, sitting at a cafe talking to a friend, and he became aware that there was a chatter running through his mind all of the time.  Always.  Never ending.

He looked into it.  He found that everyone has this chatter constantly in their brains, and that few, very few know how to quiet it or even know how to recognize it and name it for what it is:  chatter.

Continuing the idea, he said the chatter is the culmination of all that we have heard people around us say in our lives.  Our parents, our siblings, our friends, our co-workers - it all goes into an eternal place in our minds and keeps winding and rewinding and filtering every life experience.

I leaned in further.  I have spent some time disdainfully watching "reality" shows.  I hate them but am so fascinated by the human experience.  Almost always, you get to see the "real" person within any person.  And when they are privately interviewed, it seems that they are giving you their inner-chatter - they are telling you what they think about any given situation and it is always colored by their personhood.

For instance, my mother's favorite phrase was "you should be ashamed of yourself".  And I was for a while, then I rebelled against that for a while longer.  When I started adolescence, my older brother who I thought could not hate me anymore than he already did, started a full on attack each night at the dinner table "you eat like a pig".  "You sound like a pig".  It usually ended with me not finishing a meal for a long time.  And oddly, my parents saw it as me over-reacting, adding insult to the injury.

That rolls through my mind every time I sit down to a dinner table.

I'm sure my kids have things running through their minds that I wrongly set on them in words.

So when meditation guy starts talking about everyone having "the chatter" and where it comes from, I'm already on third base waiting to run home with this idea.

He said oddly enough, our inner-chatter comes a lot of times from what and how we have judged others.  If two girlfriends have talked about another friend wearing something inappropriate, that becomes inner-chatter and the more we judge, the worse the inner-chatter becomes because we are even further closing ourselves in by what we have put forth as 'self-truths' in our gossip.

And we gossip more, to cover up the inner-chatter, but just end up making more inner-chatter.

Which is interesting, because isn't that kind of what Jesus said?

But the most interesting thing he said is that we have to learn how to step back in our minds and observe the chatter, because the chatter isn't *us*.

He said that is why you need to meditate.  To relieve the mind of everything it is thinking, to empty it of all the chatter.

And if we do meditation God's way, it's even better I guess is all I can add to that.

***

So while I am on the "dealing with anger" part of my journey, I am thinking, thinking, praying and meditating.

I am noticing my inner-chatter a lot.  I am standing apart from it in my mind and realizing that it's not me - I am becoming stronger than all the voices that have forever filled my life with words that were not ever from God.

The one song on that CD that has awakened me the past week is "Awake! Awake! Put on your strength, Awake, awake, put on your strength".

I didn't look it up for the longest time, but when I did, I was blown away.

It's Isaiah 52

Awake, awake,
    put on your strength, O Zion**;
put on your beautiful garments,
    O Jerusalem, the holy city;
for there shall no more come into you
    the uncircumcised and the unclean.
2 Shake yourself from the dust and arise;
    be seated, O Jerusalem;
loose the bonds from your neck,
    O captive daughter of Zion.


Heck, I thought the phrase after "put on your strength" was going to be something about being prepared for battle.  And no.  It says "put on your beautiful garments".  If I would have looked it up and suspected that God was talking to me, I might have noticed the "for there shall no more come into you the uncircumcised and the unclean".

You can read that however you want, but to me, there is nothing more 'unclean' than the cleansing chemo.

I absolutely do not remember how that CD got into my car.  I don't know who gave it to us.  (If you did, please let me know and I will bless you with the telling of what it has done for me in the deep valleys.)

At first, I thought it was a friend of mine who sings - some of the inflections of the words in the song were similar to her east-coast-mennonite pronunciations.  She said it wasn't her.  I was bitterly disappointed.

But the songs and the Scripture fills my mind as I meditate.  After - after, I clear out the chatter.  The chatter of my false thinking.  The chatter of the judgments.  The chatter of the antagonists.  The chatter that just needs to be stilled.  And then God can speak.

And He does.



**We are all familiar with the Biblical word “Zion” (in Hebrew “Tzion”). When we delve further into the original Hebrew we are able see something about this word that just can’t be understood in translation. Did you know that the word “Zion” (Tzion) comes from the verb “leTzaen” which means “to mark something” or “to emphasize something”? Zion, therefore, describes God’s tremendous emphasis, concentration and impact upon any given place within creation.There are thousands of examples like this one that will make your study of the Bible even more meaningful!

Dr. Eli Lizorkin-Eyzenberg from eTeacherBiblical

"in my pocket"

My toenail that fell off two days after Christmas has almost grown completely back. The last chemo stripe in my toenails is still visible in it, because I don't / can't paint that one.

Actually, the toenail didn't fall off. 

In October, I walked through a dark bedroom and slammed my toenail into my suitcase laying on the floor. I yelled things that my son said he had not heard most soldiers scream out when suffering. It hurt like hell. I had chemo the next day and showed it to my oncologist, asking her if I could do the usual 'pin-stick-through-the-toenail' to relieve the pool of blood under the nail. 

She hastily said "NO!" and told me to get to a foot doctor immediately, that it was "chemo-toe" and I was going to lose that nail. I told her no, I do this all the time, and have doctored myself for a long time when it comes to my toes and she said "Karen, look!" pointing to the dark stripes in my toenails. "Those are chemo-stripes". She told me to look at my fingernails, and sure enough, more faintly, there were two stripes on each nail there as well. 

She told me chemo-nails do not heal. 

I made an appointment with the podiatrist that my son saw after he came home from bootcamp, and had to cancel it because Scott ended up in the hospital. I made another appointment, and he ended up in the hospital that day as well. 

By that time, I had been using triple antibiotic cream and a bandaid, and only wore flip-flops, hoping for a miracle re-attachment. 

I thought it had. Then while the whole family was here over Christmas, it was abused a little again, and it started flipping over again. And yeah, that is just like it sounds - it was on the nail bed - then would flip off while walking.

Not so painful by this time, just more irritating. 

It was being held onto my toe by one little centimeter of tough nail in the corner that would not let go. After all our holiday guests left, I told Scott he had to put me out of my misery, and yank the dang thing off. 

He said he would not. 

I reminded him of some things I had done for him when sick that I would rather not have done, so he conceded. I laid down on the bed, put a washcloth in my mouth and told him to yank. He closed his eyes, looked the other way and yanked hard. 

It didn't budge. And started to bleed. 

I told him to yank again, that it had to come off. He yanked again, and again it wouldn't budge. The whole toenail was off except for that one little part in the corner that was holding on like a steel cable. 

He yanked a third time, I yelled, and he said he was done. 

I went and got a pair of small scissors, dipped them in alcohol for a bit, then snipped it off as close to the tender skin as I could get. 

Don't worry - I did not drink the remaining alcohol. 

It's been a long growth process. The only pair of shoes I could wear for six months were the pair that were one size too big that we bought when I first started chemo and was swelling up prodigiously for five days each week. 

So I wore them, and washed them in bleach, then wore them some more, then washed them a few more times, until I found that all I noticed on other people is what shoes they were wearing. 

But now it's almost all grown out, albeit a bit shaggy and gross looking, and the last stripe of my total of four from the last three months of chemo is towards the end. 

***

I feel like I could write a book about the one thing in which I seem to have become an expert: Waiting rooms. I sit in the waiting room and I can point out the "newbies". I can pick out the ones that have been doing this for a while and feel secure. And I can usually pick out the ones that are here, and just don't know what kind of hell they are about to begin, but they get nervous watching others in the battle come and go. 

Sitting in the "Nuclear Medicine" wing, I'm sitting by the couple with the husband being called back for his scan, then told a while after he comes back to "please wait here, we'll see if we can get you in for a CT scan in a bit". 

There are few sentences in the English language that carry more weight. And that phrase always puts a 200# weight on the backs of the hearers. 


I've done at least two bone scans this year, and maybe another one but I can't remember. This, my third one, has affected me the least leading up to it - the others were fraught with what some have termed "scanxiety". Even if you don't, won't, remember to accumulate anxiety leading up to your appointment, your body seems to, and you tend to get a little crazy.

With bone scans, it's waiting. Waiting while the almighty radiation that they put into you in a syringe encased in lead, flows through your veins once more, enabling a full body scan to pick up any bone problems. Bone problems like arthritis or degenerative bone disease. 

Bone problems like a new cancer lesion.

Bone scans are all about waiting - you get injected then wait for three hours. If you leave, you pay for parking twice. If you stay, you end up studying too many people in the midst of their worst life nightmares. I left my house at 8:30 this morning. With a ten minute stop at Starbucks I ended up traveling for 3 hours and 10 minutes due to car accidents, construction and just slow people. 

No matter which way I go in Columbus, I notice that my body always feels the exit turn onto South 315. It's all too familiar of an exit and my body knows it is 18 minutes away from pain and hurt. I don't even have to tell it. 

It starts to tighten up, not even with anxiety maybe, but more an acceptance that it knows it's about to be poisoned to close to the end of its endurance, and I can feel it start to line up the soldiers inside, trying to strategize the best deployment of help.

As I turn onto the Kinnear exit, I automatically turn the radio up louder. Anything to stop the brain and turn it's attention into a different place. 

By the time I turn the car over to the valet, it's almost full volume.

I know this place too well. I know where to get my parking ticket stamped to get half price valet parking. I know to take the steps instead of waiting on slow elevators. I know where to sign in at the nuclear medicine wing. I know where to sit. I know to where to grab free waters as I go because I want to be pounding those all day to help my poor overused and abused kidneys. 

I know where to sit if I don't want to talk to anyone. I know which chairs have the electric plugs nearby to charge up my phone. I know where to sneak to get a free coffee. 
I know which wrist to put out to get banded. I know where to sign all of the privacy notices without reading them. I know how long I need to leave the compression bandage on the one good remaining vein they found today. 


I know it all too well. Too well. 

It's all too familiar - a familiarity I never wanted. 


***


My brain is working backwards - since I didn't build up with all of the usual requisite anxiety before any given test, is this going to be like all my other stupid "oh, it's not going to be a problem" things in life that end up being of course the biggest of problems?There is someone in my life that I avoid like the plague before these things so I don't stumble and tell her about the upcoming test. To date, every assurance, everything she has said has employed the "Law of the Exact Opposite" to happen. 

I cover my mouth when around her - it's not superstition, it's the fact that it seems when some things are said out loud, there seems to be something 'lurking about' needing to make the opposite happen. 

The Law of the Exact Opposite worries me more than the actual scan today. More than the fact that my bones are getting blasted again with "a little bit of radiation". More than the fact that my doctor might call me and tell me "to sit and wait, we want to do another test". Life circumstances have sadly taught me that the very times my brain is ok with something, is the time that the greatest disaster can happen. The times in our lives that have been the sweetest, have been followed by a walloping huge tsunami. 

So my body and my mind instantly tense up, when my brain says 'relax'.  My body knows that my brain can be easily tricked into being stupid.......

***
After the scan, I waited for the doctors to take a look at it before I left the room. I know the technician can tell me nothing, but I try to 'read them' - try to get them to talk to me to see any reaction. 

She wouldn't look at me. She wouldn't smile. She talked and *kindly* chatted. Her face looked sympathetic. 

I told myself I could be wrong. But I didn't like it. 

To compensate, while waiting for the worst of the radiation to wear off, I threw my careful diet out the window and went to Target and bought a bag of cookies. Then I went to World Market and bought Polish milk chocolate. And another bag of cookies. 

My car looked like a bunch of teenage runners had just finished a race and were trying to replenish empty calories. 

The call came the next day, just after I had put sweet Little Bird down for a nap. 

I wrote down the words "increased activity" in the spot on fifth rib on the left side of my sternum that they had been watching. 

They were wanting me back in for a CT scan that afternoon. 

My daughter was involved in a long, no-phone call meeting, so I told them I could do the scan on Monday or Tuesday. 

They called back with Monday. My little Millie-beans birthday. 

It's all so wrong. 

I cried for an hour. 

My body kept remembering the washing of the chemo over me. I couldn't eat that day anyways with the waiting, and now my stomach just felt chemo. 

My very favorite nurse called back and said "Karen, I hated to call you because I knew you would know, and would be having a hard time with it." She told me three times I think: "Just remember, it could be an old fracture" (I've never had a fracture there, and plus this spot did not show up on my first bone scan this year....) 

She told me also "It could just be arthritis". That's true. They are watching a few other "hot spots" that have turned out to be just plain old degenerative disc disease and arthritis. 

So we wait. Scott was in the middle of class and although he swore it was going to be ok, that they were just being safe, he went home early. 

My other daughter put everything aside and drove a half hour just to sit with me.  She knows what to do when someone gets scary news.  

This is what cancer-land is like. 

It's not over when it's over. For triple negative breast cancer (TNBC) ladies, it's never over.  Never safe. 

***

During chemo, I didn't allow myself to read other's journeys.  I didn't allow myself to read other cancer sites.  

Now, I'm on a few cancer sites and the recurring theme is recurrence. 

The recurring theme is walking in a world that doesn't know where you've been and certainly doesn't know how to connect any longer. 

For TNBC ladies, there is a little invisible sign up that says "it's not "if" it recurs - it's "when".  

I don't know how to connect to this world anymore. I feel a step out of time. I feel like I walk in a different dimension. I feel like I don't fit in with the rest of the world that never had their clock stopped. 

I walked with the eternal for a while, and I don't know how to slip back into real time. 

***

I've been told it's PTSD.  It just takes a while before you feel like you are living again, and no longer 'watching'.  

It does feel like I was relegated to the nicest prison, and was released.  I do connect to stories of those that have been sent to a faraway unfamiliar land, and don't know how to come back home.  

I want to jump up and say "THAT'S NOT IMPORTANT!!"  "WHAT IS WRONG WITH ALL OF YOU - DON'T YOU KNOW YOUR TIME IS SO LIMITED??!!!"

Suffice it to say, the only place I feel "right", is with my grandchildren.  They didn't care if I had hair or not.  They didn't care if I could add sums in my head or not.  We just talk, and they act as if they found an adult just like them - simple and only concerned with the momentary importance of things.  

I keep talking to God.  If what He has taught me is true, and all answers are indeed in the Torah, I'm still searching.  

When looking how Adam, and Noah, and Abraham, and Sarah, and Moses and Rahab and Joshua - when searching and wondering how all those of great faith reacted to trauma - I ask God how they did it.  Is the answer still there?  

It seems to be wrapped up in the walking, wrapped up in the journey.  And the fact that in the face of great obstacles, they kept on the journey even when they were wrong, they came back and kept walking it out.  

So I don't know what the answer will be Monday.  I do know that they will have to "watch" this forever if it is "just arthritis".  

If it's not, I'm praying that God gives me the strength to just keep journeying.  

I don't have to look far at the hospital to see how truly blessed I have been.  I remember that, and tuck it all into my memory time and again, so I don't forget.  

The ladies on some of these websites are awesome.  Some have gone through much worse.  

One of them posts something that has stuck in my mind - she says "we've got you in our pockets!"  Meaning, we are carrying your hurt and sorrow and know that it helps to know that someone is holding you close.  No matter what.  You can tell them anything, and they support you.  You can rant one day, and feel blessed the next.  

Somehow, I really like that.  And I think that is what God keeps saying to me too - "I've got you in my pocket, Karen".  

Piecing it all together

A piece of hand written white paper has been scotch taped on my kitchen pantry door for a few weeks. It says, "once we accept our limits, we go beyond them".


I have been struggling with limitations since February. I'm done with chemo. Done with radiation. I'm not medically stupid - I didn't think it would be smooth sailing from here on out, but I was so ready to get back to life and get back to living again.


Then the radiation fog descended on my little harbor, and ships couldn't sail in or out. Worse, the lymphedema train arrived at the same time, and chaos and frustration met - well slammed might be the better word here - on the loading docks of my brain.


For a lot of years of my adult life, whenever things were not going well, I would go digging. Gardening was more than an act for me, it was therapy. It was a gift given to me to work out the kinks in my brain. It was a gift given to me to work out the kinks in my soul. I used to tell my kids when they were home, that "gardening took the meanness out of me", and they readily agreed and gave me broad allowances to practice it.


If I could give a gift to my kids and grandkids that would help them understand life, deal with life, understand God and wrestle it all out in your soul with God - it would be gardening.


For many years, I considered myself a professional Bible School Teacher. I loved it. I anticipated the call from Violet Fisher every year inviting me to help teach again. I always thought it was something that the church actually got "right" - the idea that you load up the car with a bunch of neighborhood kids, take them to church, make it fun, teach them some songs, do a few crafts that mom might end up keeping forever, and tell them a few stories about how much God loves them.


Even more importantly was the idea that the teachers needed to make sure they were reflecting God, because it might literally be the only time that kid ever hears about God - and you don't - do not - want it to be a poor or bad experience in their minds forever.


With all that in mind, I was the one who benefited. The songs going through my mind at times are songs we taught the kids. "anywhere with Jesus I can safely go, anywhere He leads me in this world below".... Or the stories that some of the teachers told.


I remember Violet Fisher standing in front of maybe 600 kids one morning in her garden boots and garden dress - she always wore a dress, much like my mother, even when working, but she was standing up on the nicely carpeted stage holding a huge weed - complete with roots and dirt still attached.


She said "boy and girls, this is what sin looks like in your life. It might look nice for a bit, but look how big the roots are and I tell you what - it's really hard to pull it out once it gets started!" And everyone laughed seeing violet laughing and red faced from working hard already that morning; and I don't know how many kids remember that, but I sure do.


Gardening holds so much of life's wisdom. The only thing it cannot help me with, is not being able to do it now.


I have a lot of meanness piling up.


So when I got the above quote in the mail, I taped it up on my kitchen pantry door so I see it every time I have to get my pills out. I see it every time I reach for a super-healthy-non-sugar snack. I see it when I can't stand to look out the window, fully viewing my flower beds I have sweat and worked over year after year, that I'm not supposed to work in much this year, so I turn around and look the other way.


And there's the quote.


The anonymous 'quoter' was nice enough to add the source: Albert Einstein.


That makes it all the more worthy to me.


If Albert Einstein spoke or wrote about limitations, who am I to question the worthiness of walking that path?


***


I thought the path post-treatment would be easier.
My brain seems to be on vacation. Long Siesta. I could hang a sign that says "gone fishing". It's difficult to explain, but it just feels like the firings betwix my neurons has stopped in some areas, and my brain is searching out ways to go around those "road closed" signs that swing up when trying to do some things.


Sometimes, I feel like instead of going straight down I71 to Columbus, my brain has to do a huge detour to get to the same destination that was much easier a couple of years ago. The detour seems to head north to Toledo, then straight south through Dayton, to Cincinnati -- then maybe, maybe if the brain sparks enough, I might end up at my Columbus destination.


People who understand a bit, look at me kindly and say "it will just take a while". People who don't understand usually say "I'm the same way!" - only they're not - I've felt absent minded before, I've forgotten things before, but this is different - it's not just the traffic having to be routed to a different lane for a bit of road-work -- this is a three state detour going on inside my brain mapping system.


You lose so much to cancer treatment. Your health. Your hair. Body parts. Bodily functions. Friends.


All that I kind of factored in at the beginning. What I did not see coming and kind of hit me on my soft side, was that I would lost some brain function.


I have read two books in the last 19 months. I used to do that in three weeks. My reading comprehension is negligible.


My friend from book club sent me a book title and told me it was time to come back. She picked one especially easy for me to read - double spaced lines, less than 200 pages - and I read it. I really read it and couldn't believe I had read it. But I did.


Then we met to discuss it - and most of it was gone. I kept filling my mouth with yogurt so my mouth would be busy - I had forgotten most of it. What was even worse, I had just discussed it with my husband during the 40 minute car ride to the restaurant.


I have become comfortable using phrases like "remind me", when someone asks me if I remember something from last week, last year, ten years ago.


Sometimes, a prompt is enough.


Sometimes, I walk out of the room and cry a little.


When they cut my brain up for autopsy, I can tell you the very spot they will find damaged - I can point to it - it hurt a lot last spring during the last couple of months of my six months of Taxal/Carbo/Ro chemos.


I would wake up with blinding headaches at the same spot.


Last week at my three month oncologist visit, I wrote down a list of questions to go over with the two nurses, one study-drug coordinator, and my oncologist.


I got through the whole list, saving one question for last. I told her that I knew I would cry when I talked to her about it, so I saved it for last.


When does my brain come back?


When does it start thinking correctly again?


When do I quit waking up with a headache every morning?


Are those memory files I cannot access now gone forever?


Then I cried.


The memories of my children at home when young, are foggy. The memories of sweet things they said, sweet things they did do not recall easily now. There are gaps that I am afraid cannot ever be retrieved.


Every time I think about what is missing in my mind, I cry. I can't stand that - take some flavors of food from me - take my garden - take my books - take my ability to sit in front of a desk for time lasting more than an hour - take the sugar - take the wine - take the beef - take all that - just give me back my brain parts. My whole mind.


The part that makes me, me.


I told her I could not even balance my own checkbook. I told her I looked at a stack of mail on my desk every day and get overwhelmed and cannot stay in the same room with it.


I told her I could not remember my multiplication tables.


I asked her if it was from the radiation because after radiation is when it seemed to get worse. She told me it was more from the chemo - and that maybe I was just getting better and noticing it more now.


She patted my hand and told me I had nine months of chemo last year, ending with five weeks of radiation this year, and that it can take 24 months sometimes to heal your brain from the chemo.


I know some of my nerve endings are fried. I know my feet and hands twinge at times and react at times when they shouldn't.


All that I can live with. I can even live with the various "re-routes" I have had to do on my driving excursions - too many times I look at a sign on the highway and it takes too much time to realize I got off on the wrong exit.


I am just having great difficulty adjusting to a brain that doesn't have good reading comprehension. A brain that loses too much information. A brain that feels like a tornado touched down and wound a treacherous path too scary to look at.


***


My sweet doctor patted my hand and told me to start doing some brain exercises.


While I was in Columbus during radiation, I was quite the gad-about - imagine finally having white blood cells recover enough to where I could get out and walk into a store full of germs I had been forced to avoid for a full year. It was like being released from a prison - there were shelves full of glorious things - people everywhere - I would look and look and look and look.


And smile and talk to people.


People. My world had grown so small the previous year, then suddenly, it opened up again. Colors enthralled me. People talking turned my head and I would listen to private conversations of other shoppers.


I didn't even realize what I had missed, until I experienced it again. The "hello" from the clerk on the front register at World Market. The textures of the rugs hanging in a rack.


My sense of home style started to awaken a little again. It was awesome to think of something else other than blood-work and chemo after-effects and nausea meds - my eyes full of wonderment must have honestly made me look like I had just stepped off of a plane from a third world country.


When Dr. M. told me to do some brain exercises, I told her honestly that "I have been doing some". You betcha. I bought a book at Barnes and Noble on sale for $6 that was full of "brain teasers".


I hid it under the couch after one week.


I should have bought the geriatric, large print one that I lingered over instead.


So, fingers drumming on the table, my brain realizing it needs to repair, I reach into my ancestral DNA to think up a project - sewing! My mother and grandmother were champion quilters, and even though I have not quilted, I have made comforters, and I thought the discipline of figuring up how much material would be needed to make a couple of comforters for the "baby-room" would be the ticket to brain training.


I ended up needing 70 - 14 inch squares. Or 72 - 13 inch squares. You see the problem here. And in case you wonder, sewing is not cheap.


Not at all.


I could not afford the mistakes I was making.


But I kept trying. Scott bought me a rolling-cutter-thing, which was like the most wondrous invention of the last century - I honestly don't know how my grandmother lived without it all those years cutting out quilt squares.


(and yeah, the biggest miracle was not the fact that I managed to *not* cut my fingers off, which is very bad for lymphedema, but the biggest miracle was that Scott walked into JoAnn Fabrics with me and didn't feel the need to explain to me thirteen times how "this store has to be the seventh layer of Dante's hell".... that was the miracle on 32nd street in Wooster, Ohio a couple of weeks ago, folks...)


***


A friend of mine started a quilt some months ago. She has never quilted before, but her mother-in-law agreed to show her how. They bought fabric and decided that the MIL would do some fancy quilt squares and the DIL would do some log cabin squares, then they would all go together in one quilt.


The DIL worked diligently cutting out the fabric, then sewing all fifty-some log cabin style squares. They looked pretty good. But her MIL had also sewn her share of squares for the quilt - perfectly - and the DIL's squares were sadly not the exact, right, measurements.

They would not work together in the quilt. She had to rip them all apart and re-sew them to exact measurements.


I told her in my world, those 1/8 inch off squares would suddenly become "baby blankets", or a small couch quilt. I told her I wouldn't be ripping out fifty thousand seams.


But she did.


I told her last week that her quilt is a parable of her life - she spent much time shaping her faith and doing a lot of church work for a lot of years - all the right things Christians do - and yet she felt her faith was not what it should be. She has spent the last four years buried in study that would make a rabbi look lazy, rebuilding her faith.


She had her quilt squares all sewn together and they looked really good, but they didn't match up to the master quilter and had to be redone.


I could expand on this for pages and pages and might some day, but it's enough to say sometimes we have to examine our faith for flaws, or untruths, or just shady un-Biblical thinking and rip it apart, then sew it back together again so it matches up to the master's squares.


There's a lot of fallout from that - you lose some fabric because it cannot be handled and ripped that much. You lose time and regret that you ever had to measure up to another's measuring stick. You spend time making extra sure your measurements are correct this time around.


But the end result of a shared pieced quilt is stunning.


Her newfound knowledge of God and the very words of God - the Bible - are pretty stunning.


***


I put the comforters together. I still have to work laboriously over a piece of paper trying to figure out answers that I used to do easily in my head.


Now I have set my sights on something that caught my eye in Pinterest - "vintage-sheets strip quilts". It's absolutely brilliant - I can rip up vintage sheets that I get for $2 at Goodwill to my heart's content.


I am ripping them all into 6 inch strips. Some of them are 5 inches. Some turned out to be 7 inches. I don't stress over it too much - it cost me $2.


I'm trolling resale shops for printed sheets to go with the ones I have already ripped.


As I rip, something cathartic happens in my brain - I am taken back to watching my grandmother and mother rip the fabric for their quilts.


I am remembering.


I remembered how to square up a piece of fabric by ripping it on its grain. I remembered how some cottons just can't be ripped and you lay them aside for something else. I remembered how to foggily plan how these might end up going together.


So maybe the parable can go even further - maybe it's what is happening in my brain as well. It was all pieced together nicely, but then torn apart, and now I am needing to piece it back together again.


It's taking far longer than I anticipated. It makes me frustrated, confused and angry more than I like to admit.


While cutting notches in a sheet the other day getting ready to rip it, I asked Scott for the tenth time that afternoon what was 6 x 7? He looked at me and told me I would remember it.


I turned abruptly, thought about kicking his chair, then sat down and wrote down the 6's again.


42. 6 x 7 = 42 because 6 x 6 = 36. Adding 6 onto 36 isn't any easier than multiplying, but for some reason I wonder if that is how I memorized them all those years ago. I don't know.


All I know is that I'm ripping, and if you see any mostly cotton, printed sheets somewhere for $2 - let me know.