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