Testing Complete, Treatment Planned, Kids Dad Throws a Hat into the Stress

This post really is an update about my condition, treatment, etc. I have included links in this post to make it easier for you to learn if you are interested in a deeper understanding. 

The testing is finally compete and results are reviewed.

Let me begin by saying, the oncologist I have chosen to direct my care is the only one who felt it necessary to push for additional testing.  There were some indicators that made her question the chemical components of the tumor that neither of the other found worrisome.  This Onc is an answer to many prayers as she is going to help me to make the best decisions.

The Facts:
This is Metastatic Breast Cancer. It is spread to the bones- and cancer spread to the bones tends to grow slowly. The probability of remission is VERY high. For some women this remission lasts their life long.

The Test Results:
There are 3 common +/- tests run on breast cancer.  The first two are hormone tests. 1) Progesterone 2) Estrogen and the 3) is HER2 (Human Epidural Growth Factor 2).

Originally I was a Triple+.  Meaning the tumor over expressed (or thrived on) Progesterone, Estrogen, and HER2.  My original treatment included Herceptin, a miracle drug that is new-ish in Breast Cancer World (approved in the last 15 years or so).  Sometimes this can cause the expression of HER2 to be eliminated, which is the purpose of the drug.  It worked so well that the cancer in my bones is HER2 Negative.  So, I will not be getting more Herceptin.

The difference in treatment is actually significant.  Because I am HER2- I have 3 treatment pathways that are an option, but if it had come back positive there would be one pathway.

The Treatment:
I will be getting weekly treatment (on Thursdays, so make sure your Wednesday night prayers are good) which will be a shot in my muscle which will spread through my body and attack the cancer cells.
Along with this I will have a monthly injection to strengthen my bones as cancer will obviously weaken them.

The Prognosis:
I feel very confident one of the treatment options will be effective.  If the first option isn't effective  then there are two chemotherapy options we will move to. 

I believe the next months will be hard work.  There is only way to get back on the other side of this cancer, to go through the fire.  But, I hope to be feeling good and be over the fight for next summer.  I would love to head back down to the Gulf for a beach vacation.

Interesting Cancer Treatment Studies:
I read one study that says exercise 3x a week increases survival by 50%, so I am taking time on the elliptical and will make this a part of my week.

Another survivor told me of a study that says if you have 6 friends your odds improve dramatically.  If this allows for concurrently adding the number of friends you have, then I will be cured in no time! I have lots of good friends.

The X Factor
The kids dad is talking about moving to Texas; a whole new development.  While his presence would offer the girls the chance to know him, I am ...  I am not sure what he is expecting it to be like.  Last I knew he was getting married.  I don't know if the wedding is off and he wants to move for a fresh start or if he and his wife are looking to stir things up.  The timing is strange as we have lived here for years and he never considered moving here.  Now, when I need to focus on the fight ahead of me he is smashing in.

So, I have to live in the moment
I don't know how I will feel after treatment.  I don't know what the side effects will be like or how intense they will be.  And, I don't know what co-parenting stresses are going to be dumped on me in the middle of all of this.

But, for now, I am good.  I am happy to be celebrating Friday!  I am listening to Pandora and blogging at lunch. Thanksgiving, the BEST holiday, is just around the corner. My kiddies are sweet and their Halloween parties are fun.  And, the weather is perfect to eat homemade rolls and stew.

And, whatever comes I have to just remember to say: "I think I can" (be beautiful (i.e. not mean) in the way I treat my x); "I think I can" (be beautiful in my faith that I will get well); "I think I can" (keep doing the best things for me and my kids).  I have to say this until I can say "I knew I could, I knew I could"

Be beautiful, be kind, be gracious.  I hope I can be the same.

Love, Kel

So Much to Contemplate; Don't Want to Dwell on Anything

The first time through cancer I read, studied, talked with doctors and nurses, analyzed my own reactions and then gave myself credit for becoming an honorary Oncologist.  Sure- there was lots I didn't know, but I knew the questions to ask, I questioned the possibility of using new treatments or varied treatments- I kept my Oncologists working at educating me and offering me the most solid medical interventions we could figure out at the time.  Between yesterday and today, visiting with two Oncologist who could potentially become my doctor, I have taken my education to a new level.

First, let me say that I am please with both options.  These are two very smart, decisive, educated, research-oriented physicians.  They also present with different personalities and I feel that either would be a good choice.  Isn't it amazing to contrast a doctor you aren't impressed with to a doctor who inspires trust and meaningful conversation?

So, how do I take all this information and provide an update to friends and family reading this blog? And how do I also provide a resource to another warrior who wants to know about my experience as they face their own?

Really, right now I want to just sleep- and I think I can sleep very peacefully.  But- having all this new- and much of it very good means that I have to share it and let you know I AM GOING TO BE OK!

A quick summary, that I may expound on in future posts, would be something like this:

1. Test results tomorrow will confirm if the tumor came back with the same hormonal make-up as the first cancer diagnosis.  We are checking the HER2 expression.  Triple Positive would be the same as before.  HER2- would be a variation.
1. What does that mean?  As I understand, that isn't a huge determination to the ability to succeed with treatment.  It does, however, change the treatment that will be used.  
1. HER2-: One Dr felt this outcome was possible. Treatment would be oral, not IV.  Don't know what side effects there would be, don't know much, but it sounds like an easier treatment.  
2. HER2+ : The other Dr thought this was practically a given.  Treatment would likely be a Chemo taken at regular intervals until there is no sign of cancer, and then continued for a short time as an insurance policy.  This would coincide with Herceptin I.V. treatment which would continue for one year+.  Herceptin does sometime cause decrease heart function, especially if a patient has taken A/C, which I have.  This would require an echo every 3 months to be sure my heart is handling it, which it always has before.
2. Cancer in the bones is often time more slow-growing than metastatic cancer in other places (i.e. lungs, liver, etc.)  This is obviously good.  It is almost always responsive when it is in the bones, so  remission is highly probable.  Yeah!  But, no matter what the HER2 test shows I will begin a therapy (subQ injections monthly) to strengthen my bones.  Cancer in the bones increases probability of fractures, breaks, and osteoporosis. 
3. The PET/CT test I had several weeks ago used radioactive glucose (something-something) to measure the uptake of the glucose. Areas of higher uptake signal likelihood of cancer.  Along with verifying the presence or lack of activity the scan measure the rate of radioactive activity. My measurements at all 3 sights are not the highest that the Dr has seen.  I understand this to mean that we are getting it while it is still smaller, newer, ... and so we are getting to this fight early.

What I know:
I know that this is going to be a battle.  I will have to give a few months to this fight, and it is going to take a lot.

I know that the goal is to achieve remission and stay in remission as long as possible, and then try to get back to remission if/when the cancer presents again.  There is no cure for metastatic cancer.  However, today's Dr said some women in my situation never have a recurrence.  They maintain remission.  No one knows why some do and some don't.  I might be one of those women.  Wouldn't it be lovely?

I know I am going to achieve remission.  I believe I will raise my daughters - the most important thing in the world to me.I know God is going to take care of me and see to it that I make it through this fight to remission.  I know He knows that I (me, their mom) needs to raise them. They need ME.

I know this challenge has come at an interesting time in my life, but it has moved my focus right back to what I was trying to get focused on a week before I started these tests and the subsequent oncology relationship. So, I am going to focus on that.  I am blessed.  I have a clear and short list of priorities.  I have every reason to be hopeful.


I am thankful for:

1. The Rangers in the World Series. Wow! Did you see that wild play in the world series last night?  Bottom of the 8th.  Final out on the Cardinals.  Rangers 1st baseman does the splits to catch the ball and maintain contact with the base and thus get the 3rd out.  I am thankful for exciting and unusual plays like that.
2. Kiddies who are learning to read.  It is so exciting to hear them sound words out.  But, it is comforting that they still need your help with the tough words.
3. Talking to nieces and nephews on the phone or getting text-pics of them. Family- that's what it's all about.

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.