I began this post several days ago and have struggled to put into words all that has gone on in the last two months.  While we all hoped that "my year of survival" could be put behind me at the end of 2018, it seems that isn't possible as we enter 2019.  Once you are diagnosed with a terminal form of cancer, cancer controls your life and cancer decides when you can put any of it behind you.  

At my November oncology department we learned that my tumor marker counts were increasing.  Increases are never a good sign.  Could it be due to inflammation from my October surgery?  Or is it stress from the news in late October that dad would no longer receive chemotherapy and any further treatment options for him were not recommended?  Does it mean that my body is becoming resistant to my current treatment plan and new drugs should be considered?

In early December Dad entered hospice care and a plurex drain was placed in his lung to relieve the ongoing fluid build up that was occurring from the cancer now invading the plural sac of the lung.  Instead of our usual tradition of spending a family day at Crown Center and Union Station, mom rented a limo bus as a surprise for Dad and we spent several hours one evening on a holiday light tour around Kansas City.  Dad stated it was the best surprise of his life.

At my December oncology appointment I learned that again my tumor marker numbers had risen.  We discussed if it was time to remove my ovaries and that I consult with a doctor at KU for a second opinion.  I also received the news from my bone scan and CT that there was no evidence of new cancer lesions in my bones and existing lesions appeared stable.  We decided to seek that second opinion. 

Throughout the month, I continued to visit my plastic surgeon each week to receive a "fill" of 50 cc's of fluid to each my reconstruction expanders in my chest.  While most of that area of my body is still numb from surgery, I am the luck patient who has an internal nerve over each port of the expander.  And let me tell you that when that needle hits the nerve, it is the worst pain I have experienced to date.  Each week I would bring either my mom or my best friend with me to have a hand to hold during the procedure.  Each week I would become a "hot mess" crying to the nurse practitioner about how unfair this whole thing is for any woman to experience.  You see nothing about the process makes me feel feminine, I feel violated at this point.  The good news is that I have completed the process and await the final surgery to place the permanent implants in 2019.

A few days before Christmas, Dad's health began to deteriorate so we made sure to have Christmas on Christmas Eve and spent the entire day as a family at mom's house.  Dad even joined us at the dinner table where we enjoyed a wonderful meal provided by my parent's bible study group.  We shared many fun laughs that day and tried to stop our minds from focusing on the fact that it would be dad's last Christmas with us.

On December 27th I was to have my first appointment with the doctor at KU....we arrived as the first appointment of the day to learn that she was out ill.  So we rescheduled.

New Years Eve I found myself simply in a funk.  While many battling an illness were celebrating how far they'd come throughout the year, I found myself envious of them.  Envious because I couldn't cross 2018 off as a year closer to the light at the end of the tunnel.  It felt more like crossing off a year further into a dark hole of terminal illness.  So many say "we are praying for you to be healed" and the reality is that I need prayers for stability in my diagnosis so that I can spend as much time as possible on this earth.

On January 4th I attempted to see the doctor again...they called to say again she was out ill.  So we rescheduled.

Throughout the weekend of January 5th, Dad was able to muster the energy to move to his chair each morning with our assistance.  This weekend he had several special visitors that stopped by to spend time with him.  Some were surprises for him from out of town even.  It was special to watch his reaction with the arrival of each guest.

On January 7th I attempted to see the doctor again...they called to say again she was out ill.  So we rescheduled.

On January 11th I successfully saw the doctor at KU.  It was determined during our visit that I needed to have a bone biopsy to determine the mutation/genetic make up of the cancer that is there.  She believes that there are a few clinical trials that I will qualify for once she has this information.  She believes that my body is becoming resistant to the current treatment plan.  I am scheduled to have the bone biopsy on Friday, January 18th and it will take 2-3 weeks to have the full report to review.  Additionally it was decided that for now I would continue my care with 2 oncologists on my case.  Dr. Singh at Research and Dr. O'dea at KU.

Also, on January 11th my dad finished his race and entered the gates of heaven.  He was surrounded by many members of his family (the most important thing to him) with his favorite praise and worship song playing in the background.  He is no longer in pain however he is so greatly missed.  

On January 13th I had my monthly appointment with Dr. Singh and learned that my Vitamin D level has seriously tanked to a dangerously low level.  So I have started a 12 week treatment of 50,000 units of Vitamin D taken once a week to see if we can get it back to a normal level.  This explains the constant fatigue I've been experiencing too.

So as I said.....2019 isn't off to the start that I hoped but this is all part of my story.  I believe that everything that happens has meaning in our lives and I will wait to see what that meaning is this time.  This post is very raw and real because its the part of my story that must be told.

Love to you all,

Stacy