Good Counselors

I have some really smart and wise friends.

I was thinking about jumping out of the study this week.  It kind of "checked" me when with all of my other extreme symptoms last week that I could not focus my eyes to see print for days.  Along with all the other pain, agony and defeat, I was wondering if I was doing the right thing.

If I have a window of time to jump on this cancer while it is still highly sensitive to chemo - whereas next summer these cancer cells will be a little savvier and wiser to the chemo trying to kill it and put out a sign pointing it in another direction - next summer may be a different story.  Now is the time to kick this in the ass.

If I have that window of time and am being knocked out of my very important *early* weekly treatments by low blood counts more than likely caused by trying to find the "highest dose tolerable" -- should I continue in the study?

Or should I bet my money on the "standard of care" treatment and be a little easier on my body and maybe stay with the weekly treatment regimen a little better....

I thought about it a long time.  Especially when I was so fatigued that I couldn't move much.  

On our long way back from Columbus last Wednesday, we stopped at a "lysoled" twice over friend's house for a bit that is halfway between here and Cancer Treatment Place. 

I talked to LeeAnn about it.  She questioned me pretty thoroughly on what the "experimental" drug was doing.  I cannot explain it, but I tried.

She asked me some more questions then repeated my answers back to me.  

She finally said, "wow, if that works, it's going to be pretty awesome for your chances of recurrence the next 5 years".

"But it might not work."

She asked me again what had to happen to make that one drug get to a "Trial Phase One".  I explained it again.  It's pretty extraordinary all the lab work and money that goes into getting one drug to the point of "Trial Phase One".  I like that part of the medical field, but also view it with a somewhat cautious eye.

The cautious eye part had her.  She asked me again who was behind the study.  Um, Dr. M.; OSU James Cancer Research Center; the Cancer Society, aka watchdog of America-all-things-cancer.

"oh, really?? all of those are on board??"

On the way home I realized she already probably knew all of that......

I talked with Morven about it when she came out to clean for us yesterday.  We had a pot of tea instead and she heard me out.  She had me tell her the width and breadth of it all.

She said she would never venture to tell someone in my position what to do.  She agreed it sounded pretty brutal and a scary place to be, not knowing which ship to jump on and all.  

Then told me she had visited a display in a museum once that was titled "The History of Breast Cancer".  They had visuals and pictures and she said "I never realized what they did for women with breast cancer in the early 60's - they sometimes even cut their arm off, too".

I told her I had seen those pictures and I realized how each decade cancer treatments had lost it's original horror due to a lot of studies and a lot of previous women walking some pretty horrible journeys.  I told her what Dr. Bauer had told me when he first discussed chemo with me.  He said "chemo is not the 'wrap yourself around the toilet for 3 days' like it was 15 years ago - we have developed some really good drugs to counteract a lot of those symptoms".

"And it's true" I told her, "I get a wonderful anti-nausea injection with every IV chemo treatment that lasts for two days".

She said it's *amazing* what they have learned along the way *studying* all those cancer patients.

I do not suffer anything like previous decades of cancer patients have. 

The blessed problem with my friends is that they understand a lot how my brain works.  I don't want a nurse practitioner telling me my blood counts are low again and trying to put a positive spin on it because in the medical field you are taught "how-to-give-the-worst-possible-news-in-the-best-possible-light".

In other words - take the dirty stuff and make a glossy ad out of it. Sell it. 

I didn't want that - I wanted to be in the blood lab standing beside the doctor when she read the results -- did she say "Oh **** - how can this be?"  Or did she say, "ok - we are exactly where we want to be, now we know what to do next week".

I need the real story, not the media spin on it all. 

Scott likes the glossier, spin reports.  And he repeats the words to me and they are oh so badly positive, and I smile and nod my head because he needs me to, but my heart desires the gritty stuff.  (yeah he has had to live with that for a lot of years)  He is awesome and positive and can motivate people like no other coach and teacher I have ever seen.

But I need the bare hard facts, ma'am. 

What does this really mean?  Am I throwing too much caution to the wind by trusting them with this study?

So these two friends completely independent of each other, knowing how my brain works, laid it out for me -- they both said the same thing at different times, at different points -- "if this drug works, just think what it will do for cancer patients in 10 years."

"If it works, just think what it will do for you in 10 years.  And your name will be on the honor roll."

They refused to tell me what to do, but made me look at it rationally, intellectually and led me by the hand to think it out and agree with what my ever-so-foggy brain already knew and kept sending out urgent SOS's to the shoreline lighthouses -- "WATCH HER - she's perilously close to the breakers!!  Keep her sailing!  Keep her on course."

Keep with the ship's master travel plan and maybe you will avoid some rockier places on that dark shoreline that you cannot see but are waiting to crash you none the less.

My brain knew that - but my body was screaming for it to shut up.  

The whole thing about God teaching me about community and how much I really need it is ever-present these days.  What if I did not have good God-fearing loving friends to hear me out - to listen to me worry, then remind me of what is intellectually right even when my brain is so tired and weary and foggy and I just want the pain to be over - what if I didn't have that community about me, praying for me, massaging a sagging will, encouraging me?  (I mean you have to feel with Scott here folks, he can only take so much of me *thinking* it all out.)  

Pain is a tortuous tutor - and makes you think and do things that you would not consider smart on pain free days.

I remember when we visited the Outer Banks two summers ago that we went to a little museum that showed the history of what many had done to save ships along the shoreline at sea.  There were literally hundreds of men that lived very lonely lives so that ships would not crash onto the rocks or get caught in one of the large sand bars.

I remember one picture of a man leading a mule with a huge lantern on it - and he would have to walk the shoreline up and back, up and back in the worst weather, just so the ships would have warning. 

This sounds a little corny and even a little "Christian cliche'ish", but God is ever so pounding this into my soul -- you need a few lighthouses on shore to send messages back to the ship in the horrible storm, helping you avoid the sand bars that could stop it all.

I think I even know a few women leading some mules with lights on them helping me see the warning.

God is kind of crazy good like that.

And I thought I could do this privately alone....