Struggling but moving the right way



Test Levels

Here is a graph of the blood tests for tumor marker CA27.29

It is telling you, that at a point in time when the Onc didn't expect to see any decrease in the tumor levels they are dropping.  Getting well below the 50 mark would score a "normal" rating.

My feelings: this is because of all the wonderful people praying for me, offering help with meals, housework, kids, laundry and sending love.

My (non-medical) opinion of what will happen:  I will continue to get "sick" after treatments.  I think it will build up and get tougher as time goes on, but it is still nothing compared to chemo.  I will get through the treatment that is needed, and earn my NED status.

My hope: Someone can explain why my joints are hurting so much, find a solution and I will feel better.

Ramping Up!

There are 3 days left til the next treatment, and I am sure Nurse Stacey can't wait to stick it to me. (Ha- not really.  She is sorry it hurts but makes no apology for helping to save my life.)

I am anxious.  Not super nervous, but apprehensive about how I will feel.  Will have the energy to go on a Girl Scout outing this weekend and enjoy myself?  I really want to have a good time and take some fun pictures, but last time I got (hormone-blocker) shot I was totally whipped over the weekend.
There is also a play the kids are putting on the night of treatment- their Thanksgiving play, and I know they are so excited. I want to be energetic - "that was great" mom for them, not -"ok, let's get home to bed" mom. Who has fond memories of their mom always cheering them on by saying, "Ok, I am really tired.  You have to go to bed early tonight."?

So, I have to start getting hyped up, setting my frame of mind, and find some visualization therapy that I am going to start using.

When I was in chemo 5 years ago Nurse Lisa (patron saint and one of my idols) taught me to visualize the healing and to use mediation to get through the nasty (makes-me-gag-to-think-of-it) Red Devil treatment, Adriamycin/Cytoxan.  She even loaned me her zen place.  I never did find a better one, so I still go there.  It is an awesome place, but you aren't invited;  I go there alone and totally relax.

This treatment is going to be...

• Easier than the last because I know what to expect this time
• The release of little vials of White Knights marching through my body, leaving no uncheck cell as they search out every cancer cell, KILLING them. (I am imagining a team of the most muscular, elite soldiers, the best of the best) 
• Successful! I think this treatment is going to be 150% more effective than the treatment two weeks ago (this is not quantifiable, but I believe it still)
• A metaphorical attack on more than just cancer- but an attack on all things that are creating stress in my life.  It is going to bring peace.
• A fight to honor GB and CM - two people I love who died of Breast Cancer.  I believe they are on the other side pulling for me, along with many angels.
• A declaration of my quest to become NED!

It is hard to hope for the chance to beat cancer again for a while when others don't. I know I am not better than they are, in fact I am nearly sure they are better than I am, but it isn't a onsie-twosie thing.  They don't die so I live; and my living doesn't cause their death.

I have to remind myself that they would not want me to die to make it "fair", they would want wonderful things for me because they are wonderful.  I can live even though they are gone, and it is all alright.

So, you handsome soldiers, KAEMPE FOR AT VINDE!

The Most Important Decision!

Whenever you are facing something life changing decisions of enormous magnitude that must be calculated and committed to.  Some people make these commitments easily and are open to coarse correcting decisions along the way.  Others, like me, struggle to know the single option that will lead to the exact outcome desired.  We play out scenarios in our minds from beginning to end, calculating the risk, weighing the results.  We are "slow" to commit. For me, it is because I feel that the decision I make is a life long commitment.  I am not a changer, I am a keeper.  For scientific-deciders like me, a course correction feels like a defeat.
I don't know which way is right or which way is wrong.  I don't even think there is a right and wrong way; decision methodology is just a way of being.  It is part of our chemical make-up, at least that is what I believe as I compare myself to my siblings and compare my kiddies to one another.  Some are doers-and-changers, some are one-timers.
No matter which type you are, when it comes to your healthcare team, especially your oncology team, you MUST be a doer-and-changer.
Think of yourself as the CEO and President of your health.  You hire a medical team on a right-to-work basis- meaning you can hire and fire at will.
I don't mean that you should change healthcare providers as you mood or side effects change.  But, you are going to pay handsomely for their services.  They are selling you services.  If you aren't getting what you want- make a switch.
Think about it.
If you were getting a new hair stylist you would try someone out once.  If it seems to go well, you will be back for a trim or root touch-up in 4 to 6 weeks.  Still looking good?  Hopefully a little better than last time even since they are getting to know your hair and style. We are now considering a long term relationship.
But, if you had a questionable first experience and the second visit shows you are going down hill fast would you really go back again?  Not even I would be that committed!
The same goes with your healthcare team.  You have to advocate for yourself.  You have to find someone that you trust with your life. That is literally what you are doing.  Selecting someone who you trust to make what are potentially life-and-death decisions for and with you.
This is what I have been up to the last few days.  I had some solid concerns over the Onc I was seeing.  I had been lazy and stuck with that doc for a year. I reasoned that I was just doing a couple routine visits for follow-up.  I had found a different doc I wanted to try, but didn't want to go through the hassle of transferring records and getting time off work to go in for a visit.  (dealing with guilt over taking time off work for health care is a topic for another day)  But, when the CA27.29 came back bad and then the PET came back spotted like a Dalmatian I had to get honest and deal with my laziness.
I got my second opinion today.  NIGHT and DAY!
I found someone who connected on the intellectual level I want to function at, who understood the disease, research, options, drugs in testing, and took the time to speak with me until she could see that I had absorbed and processed all of the data she was sharing.
She verified the conclusions of the previous Onc.  And then see went to work requesting the tests that will fill in gaps in the testing I completed last week.  I bit of my bone biopsy is being sent out for HER2 testing. She then went over an outline for treatment options again.
So, today I learned that we may or may not be treating HER2+.  My original cancer was E+, P+, Her2+, or triple positive.  The biopsy testing didn't include the HER2 testing, although Onc 1 lead me to believe it had been included.
If it is HER2 + we will go with one family of drugs.  If it is not, then we will be looking at a different family of drugs.
THIS IS A MAJOR FACTOR IN TREATMENT!
Why did the first Onc want to start treatment based on the assumption it was HER2+?  If that assumption was wrong I would have waisted chemo, a head of hair, and precious time I want to spend saving my life.
So, today was a great day.
I feel like we are headed in a more constructive direction.  I feel trust and hope in my options for a Onc Team.  If I choose this team or another team I know that the options are in my favor.
Tomorrow I am getting a second second-opinion.  Well, actually I feel like today was really a first opinion.  So tomorrow is my second opinion, right?

By Wednesday/Thursday I will know if I am fighting HER2+ again or not.
By next week I will have a treatment plan!  I will be on the warpath.  I will be fighting with full armor.
Envisioning this makes me feel strong.


My Blessings:

1. I am grateful for friends and their faith.  Thankyou for your prayers and the fasting you dedicated to me.
2. Working 8 hours with out a nap today, and then getting off work and working on other projects.
3. Halloween candy dishes, especially caramel apple suckers.
4. People who love my kiddos and make them happy.