Tuesday, December 16, 2014

Day 70: You Will NEVER Believe What I Have Chosen

God works in mysterious ways.  Without a doubt, both my husband and I believe that God wanted us to be back on the East Coast and in the DC area (despite all the freakishness that happened [and continues to happen] with this move).  We are here for a reason.  And part of that reason was to create a waiting place between Kansas and DC.


God placed me in the waiting place for a good reason.  And I have chosen (believe it or not) to stay in the waiting place.  I dread the waiting place. I loathe the waiting place.  There isn't nearly enough activity in the waiting place.  But the waiting place has become my friend. Upon arrival in DC, we immediately set upon meeting my new oncologist (who is a rock star that looks just like a blond version of my sister in law) :)....we both had questions regarding some of my test results and so we decided to rescan my body and take a closer look at my tumors.  While we waited for the results, I also had an appointment with the National Institutes of Health (NIH) up in Bethesda, MD.  Let me tell you, that place is amazing.  While it is an ALL DAY event to go into the clinics, it was worth EVERY penny of my time to spend with incredible researchers, doctors, nurses and other staff that walked you through the entire protocol process.  Remember last week where I wrote about the top ten things every hospital should do (you can read about it here)?  Well, NIH knocked these out the park (and yes, they had Starbuck's coffee too).

Following additional testing, exams, and a review of my history, my doctor at NIH looked me in the eye and said, "Anna, I'm 39 years old too.  I have a wife, kids, a job.  If I were you, I would not seek treatment for your cancer.  It's not extensive enough.  The staging is not correct.  Your "good cells" in your tumor far out number the "bad cells" in the tumor and you are young.  This needs to be your decision and if you feel you cannot wait for treatment, then we have treatment for you.  But if you can watch and wait, you slow down entering the treatment cycle."  With my kind of cancer, once you enter the treatment cycle, you begin a cycle of remission, relapse, treatment, and over again.  This is very hard on the body and exposes the body to a lot of toxicities.  I'm young.  My tumors are not causing me to be symptomatic at this time, it behooves me to watch and wait.  My NIH doctor shared hope for me.  He wants me to be a part of a natural history study to explore WHY I have this cancer.  And he explained that when the time is right, they will have treatment for me.  It could be a multitude of different things, but when you have the opportunity to wait, you also have the opportunity for new research to be released for public protocols and each year, better and better treatment becomes available.  One day, there will be a CURE for my kind of cancer.  The waiting place gives me a chance to be a part of that "one day."

My local oncologist concurred with my NIH doctor that the repeat scan found only a small, 2.3 cm tumor cluster in my neck.  Nothing was seen in my chest or abdomen.  My blood work is beautiful and both doctors concurred that my shoulder pain was a physical ailment versus as tumor ailment (in fact, my scans DID show arthritis of by C7-C9 vertebrae, so we DO have conclusive evidence I am getting older--HA!).

Which leads me to the dreaded waiting place.  I have never liked the dreaded waiting place.  As a do-er, the waiting place blows.  But I am amazingly at peace about this decision to watch and wait.

The waiting place allows me to grow closer to God.  I am putting my trust in God that the waiting place is right for me.  The waiting place allows me to physically hand over my cancer and my care to God and trust in the Lord God with ALL my heart and ALL my body.  This gives me joy.  I still have worry and anxiety.  I still wonder if I am doing the right thing, but in this waiting place, it allows me to PRACTICE TRUST that God has a greater plan in store for me than anything I can possibly understand.  God has led me to this place, to these doctors, and to this plan.  The waiting place has allowed my tumors to either get smaller or disappear, or whatever might have happened.  Without the waiting place, I would be starting treatments that I might not be ready to use.  In this waiting place, we have the chance (albeit small, 8% chance) of spontaneous remission.  In the waiting place, there is hope, there is peace, and there is a chair with God by my side.  In the waiting place, I can hang up my coat of worry and busyness and rest a little.  In the waiting place, there are all sorts of levels of healing.

Some might say my story is a story of mis-diagnosis.  One can say that.  I would rather think of this part of my story as a testimony to prayer.  I have simply THOUSANDS of people praying for me all over the world; of all types of faith and belief, and of all sorts of denominations.  God has heard everyone of those prayers.  A friend described it "storming heaven" with prayers.  Y'all keep storming heaven for me.  This isn't over.  This isn't a sprint.  This is a long haul of the rest of my life and prayer makes a HUGE difference.

This has been a wonderful example of the power of social media.  We have a prayer chain without end when we share our lives over the Internet and ask each other to pray for each other.  YOUR prayers matter.  They have made an amazing difference in my life and I cannot express my gratitude enough.

Does this mean I will be in the waiting place forever?  No.  I am okay with this.  I will probably have treatment at some point in my life.  But today is not that day.  Does this mean my cancer will not grow?  Probably not.  But today is not that day.  Could things still go terribly wrong?  Possibly.  But today is not that day.  Could things possibly get even better?  Maybe, but today is not that day.

Today, is a waiting day.  Today, I am okay with the waiting place.

God is there.