Dr. Cole + A Plan

December started off less than joyfully.

While sitting in church, I glanced down to the phone peeking out through my open purse.  I noticed the highly awaited notification: YOU HAVE A NEW TEST RESULT.
I told myself that now wasn't the best time to get bad news, but couldn't help but open the app and read about my near future.  My least favorite parts were "grown worse since previous scan on 11/1/2019" and talk about possible LUNG metastasis.  I showed it to my in house medical man, and he agreed that it wasn't good --more spots showing up, which are already worse than the scan that happened only a few weeks prior.

For some reason, this all hit me right then.  It felt as if I knew what could always happen was now ready to take me.  I cried and snotted through my medical mask, and then another.   I went. home and asked my Dad and Stephen's Dad to bless me with healing and comfort.  (Everyone was in town because my youngest son had been baptized the previous day.) I was grateful for loved ones in town, but it was hard to be feeling so warn down and wanting to wallow in misery.

All I wanted to do was sleep and cry that day, so I had a long conversation with God.  It went something like this:

Why is this happening again?  Do we not have enough on our plates?  I'm getting tired; I don't know how long I can keep going.  Is this one going to be THE one, the ending? I want too be here for my family.  Surely, I haven't done all I can do on the earth yet?

No real answers came, except being able to feel love and joy through my family, still in Texas---but, not for long.  Soak it in!  I tried to follow that advice for all the time that multiple branches from the same family tree stopped to hang out in our home.  It was both anxiety adding and positive group therapy to prepare for the battle in front of me.    

 There are still unanswered questions like:

What's the plan?
Are you doing chemo?
How bad is it?
What are the side effects?
How many doses will you take?
Where will you go?

Questions from family, friends, church family, social media went on and on, BUT I still did not have all the answers.    In the last few weeks since my initial scan results came back, it's felt like I was in limbo or "The Waiting Place," as Dr. Seuss called it in one of his famous books.  The waiting place can be difficult, especially for an aggressive cancer, more specifically-MY CANCER-because the PET scan even revealed that cancer has most likely grown inside my body in three weeks! (Dr. Fleener called to give me a second opinion!  She gave me some good advice and points to ponder.  Mostly, she wanted to emphasize that I am not to the point in treatment when I have to resort to a trial.  It's not my season to make my way downtown all the time and hopes that I consider a drug that she had talked about using a few years ago for me.  (It was encouraging to hear her chive again and to know that she took time out of her daily routine, just to talk to me.)

I had much to ponder, but not many answers to help make any sort of plan.  I was in pain everyday.  I was tired EXHAUSTED, and slept quite a bit.  I felt so horrible on Sunday that I didn't seem to have the energy to get out of bed.  I was down and almost out with allergies that became a cold with a cough, but NyQuil knocked out that sucker.  I was feeling sorry for myself and my family and sad and frustrated and upset and full of questions and concerned about what happens to my people when/if I leave them soon.  All this thinking was destructive, so I vowed to try to do at least one big thing around the house everyday.  In addition, I added a new catch phrase: "If you CAN now, do it NOW."  This is for small things like: take that read magazine from the bathroom to the recycle bin; play a game with my kids; call or text someone who has been on your mind.  Once I decided to start doing the little things now (overcoming my procrastination), daily chores got easier.  I had already done the tidying up, so the real deal was lessened.

I was feeling better.

FINALLY, my follow-up appointment rolled around.  It was good to see Dr. Coolio.  

She started by going over a bit of the scan, after asking if I'd read through it.  Then, some big changes were discussed from the biopsy: My cancer is no long estrogen driven.  No such luck with Her2.  

I'm now Stage IV breast cancer, ER- PR- HER2+.   This means I can stop taking Letrozole or any drug meant to block that hormone.  

We talked a bit about how unfortunate it was that BCBS denied Perjeta, which is a sister drug to Herceptin, and five months later, it's back.  

We discussed what I wanted to do.  When I talked about wanting something that would wipe the slate clean and then maybe maintain that.  Dr. C asked which major chemo drugs I have taken, complete with my reactions to them.  She also checked with the blood biopsy (still not done, but has some results).  Because of something in my blood she noticed, that opens up another treatment for the future: a pill that has many of the same side effects, but it's just a pill.  Plus, there might be trials we could look for.  Then it was time to discuss:

I wanted the blank slate.  

She loves trials, but agreed with me.  

Without further adieu, HERE is THE PLAN!

1. Paclitaxel + carboplatin = Carbotaxil (one dose of 300ml every three weeks, for 6 doses.)

We will scan it partway to make sure the tumors are shrinking.

(If insurance doesn't cover this, there is another chemo to try. )

Plan B will be Kadcyla (Dr. Cole has less experience with this drug, but this is the one Dr. F suggested.  

Plan C: The Piqray pill that could fight now because of one of my blood mutations. (Very effective, but very toxic.)

Plan D: If I still want to fight, after all those options not working, THEN we would look for a trial.  

This meeting and making a pan was actually the beginning of an attitude adjustment for the better.  

I HAVE A PLAN!  

Let's go BTHO cancer, and kick it to the curb! (In sparkly shoes, of course!)