What we didn't talk about for two days....

My 'in-depth' day on Wednesday at the James Cancer Center / Stephanie Speilman Center was pretty rough.   

It was the beginning day of my fifth cycle of chemo.  Only one more cycle to go after this.  One more carbo hurt.

It was also the last day of the tests for the trial study part of my experimental drug.  (I think, there are always lots of surprises.)  I started at 7:45am, and we left there at 5:30 after a day full of tests and appointments and chemo.

I've had better Wednesdays.

The first test was a comparative mammogram.  IF you ever, ever wonder about the difference between a digital mammogram and the usual, wonder no more.  I saw the digital, and it is like looking at an x-ray versus a CAT scan - it's that different.

But she took two scans, showed them to me, and then instructed me to wait in the all female waiting room while the "doctors" looked them over.  They can push a button and voila! the doctors in three parts of the building immediately see the results.

They are kind of techie-amazing that way there.

In that large waiting room, it was kind of obvious that they do a lot of the mammograms going on in that city.  It was also obvious that I was the only one sitting there with no hair and a hat on.  I was everyone's fear.  It was a little lonely.

Then she called me in for two more.  Then I sat in the waiting room alone again, and she called me in to do my other side "for a better comparative".  Then called me back for another view.  I don't bite my nails, but this was beginning to not feel so positive.

Then she called me back in for "a few more views" and quit showing me the results. Then once more.

I counted five times being called back in.

There was something growing deep in the pit of stomach, and it mostly goes by the name "fear".  Not the "hey, surprise!" kind of fear, but the kind of fear that I have to work hard and pray hard to push out of my mind for a while whenever I hear the word "metastatic".

But it was bold face staring at me now, and I couldn't push it down, I couldn't talk it down, I couldn't think clinically and move that emotion out of the way.

Then I went to ultrasound.

I know enough medically to be dangerous.  I have seen a lot of x-rays.  I have seen a lot of surgeries.  I have seen some surprises and some disappointments when it comes to treatments.

I watched the ultrasound and it looked even worse.  The lumps still showed up the same size, same place two months later.   

On March 7th, my last ultrasound, the lumps had been visibly and technologically measured to be half what they had been the end of December.  We all celebrated.  It was great news.  Like, "you might live" great news.  

So I think I was kind of hoping and maybe somewhat expecting some more of the same.  And I slammed hard into the wall of knowledge that to my eye, they had not changed, and that was what the report said later, too.

And now that my chemo brain is not under as much duress as it had been previously, I saw something I had totally missed on my last ultrasound March 7th -- there was another lump in there.  It had grown until I probably started my chemo blasts in January - so from the end of December until it was caught on film two and a half months later it had snuck in there unawares to me.

And I still hadn't seen it then in March.  That's something that was kind of noticable, but I had missed it in March when it was right there on the screen in front of me.  Only after I saw the three screens side by side Wednesday showing all of my ultrasounds did it finally hit me what I was seeing.

I don't remember much of February or March at all, anyways, I guess. 

***

Scott has been beside me, literally, for much of this.  I call him "Mr. Positive", because he is almost naively positive, and he is able to turn a blind eye to what we don't want to see sometimes and encourage me to do the same.  But he wasn't beside me for this.

My eyes saw the ultrasound, and my body reacted and started to tremble.  Then it started to shake.  The sonagrapher was very quiet.  I started to cry very quietly - just one tear kept popping out after another.  I couldn't stop them.  She offered me a warm blanket for my shaking, then saw I was crying and offered me a tissue.

There wasn't anything else she could say.

I listen to scripture online and it plays while I go to sleep.  I think God woke me up one night to hear one verse that I had taught children in Sunday school years ago - "perfect love casts out fear".  I have repeated it over and over many times.  I kept repeating that scripture to myself in that room, and the fear would not stop.

But a song popped into my mind.  I thought I knew some of the songs that my dear friend Diane had sang Friday night and had googled it, then asked her, and in that room it came back in broken parts - because I don't know it all that well - but it was perfect broken parts.

"Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near"

It helped.  But the tears just kept popping out one by one.  

So I walk out through the waiting room with someone leading me to another waiting room, and they called Scott from the waiting room he was in because they have different levels of waiting rooms there - all female with most wearing white robes, then a somewhat *upset* co-ed room with white robes and interspersed males, and then the usual co-ed which he had been left waiting in.  He walked in and just said "hey there, Babe" like he has a thousand times, and held my hand.

And I stopped crying then, but I knew he had not seen what I had just seen, and it rattled me really deep inside.

***

We met next with my surgeon.  

My surgeon was not concerned.  He said sometimes ultrasounds are not reliable in these cases and that it was nothing to worry about.  He said I would not know for sure if it was still the tumor until after my surgery.  He said I would not know then, until after my pathology if there were still cancer cells.

But he stated again, not to think too much on the ultrasound.

And the mammogram.

He said I still needed to finish up my chemo and he even laughed when I said "yeah, I was not wanting to miss those last two carbo hits".  

I only half believed him.  I had seen it and I didn't necessarily believe both types of test could show up that much tumor and not be reliable....

Mr. Positive on the other hand, believed.

***

Bits of the song kept playing on my mind.

"Whom then shall I fear?"

***

Heidi had texted Scott saying she was coming over to meet my doctor and probably, I'm guessing, because she of all people knows what it is like to sit in waiting rooms like that.  She didn't know any of what had just shown up on the tests, but she wanted to be there.  It was a good surprise.

She knows too well what it was like to sit and wait and talk to medical personnel until you cannot think anymore.  

So we all waited together, I told her, and she had a piece of knowledge that might have been delivered straight from an angel just for that specific moment in time --  but she said that she was told -- and I am always careful when people start conversations like that - but that she had been told that sometimes tumors leave "shadows".  She said her surgeon had told her to wait to get an MRI and CAT scan done for five years because the tumors leave space when they are gone.

I chewed on that for a while.

***

Then we went in for the doctors appointments and talked to my study-nurse-manager-Julie.  She said the same thing that the surgeon had said, only much more lovingly and emphatically - that sometimes it's all gone and it still just shows up on the ultrasound.  I moved an inch closer to believing them.

***

I saw one of my favorite oncologists, Dr. Bauer, for the last time.  Dr. Mrowzik's "fellow" is leaving this month to start his career in Nashville.  If you live within 400 miles of there and need an excellent oncologist, call me and we will track him down.

But he said the same thing.

He also took the time to talk with Heidi about the genetics with this whole cancer and I am sure relieved some of her fears.  Fears like "am I next?"  He told her that she was now living in a new world of having her closest female relative being alarm-number-one breast-cancer-wise, but on the other hand, told her that this was not the usual genetic type of cancer.

He laughed when I asked if I was still receiving enough chemo with all of the reductions of late.  He wanted to know if I thought they would just give me chemo to make me endure the side effects without any efficacy???

It was funny at the time, anyways.

***

"Oh no, You never let go
In every high and every low"

***

Then Dr. Mrowzik came in.  I wasn't supposed to see her, but she still came in, concerned for me, because it seems like word spreads like wildfire around that place.  They get word around faster than the hundreds of gaggles of geese that hang out at Cinnamon Lake. 

She told me not to worry and gave me the words that I finally hung my hat on that day.  She said it could be, could be, necrotic tissue in there.  That it is either mostly gone or all gone and my body may not have absorbed the dead tissue yet.

That, finally made sense to me.  

Again, she said, like my surgeon, that I would not know for sure until surgery.  But she was betting on the fact that it was not what it appeared on screen.  

So, Mr. Positive and I walked down to chemo with much lighter hearts.  After all of that, meeting up with my old foe-of-a-friend "carbo" didn't even seem all that bad.

"Yes, I can see a light that is coming for the heart that holds on"

I still don't know how it is all going to work out, but am so thankful for words in song that help me hold on.   

*******

I wish I had Diane's version, but this is next best.   If you know Diane, it almost sounds like the her talking. 

You Never Let Go

http://youtu.be/b61wsBdqrKM

   
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You