So it dawned on me last night (in those wonderful hours of NOT sleeping) that maybe I should have started from the beginning of this journey.  So for those of you who don't know the whole story here it is.

In May this all started due to an abnormal mammogram (and for those of you who are supposed to have had this test done and HAVE NOT please take it from me - please get it done).  I had some irregular calcifications and needed to get a breast biopsy.  In the consult with that doctor she found the nodule/lump in my neck and suggested that I get an ultrasound done and referred me to a wonderful ENT (Dr. Moses).  So in between the breast biopsy and awaiting those results we had to get the ultrasound of the neck, as you can imagine a little overwhelming dealing with both.  Thankfully the breast one came back clean unfortunately I wasn't so lucky with the neck one.  From there I needed to get the neck biopsy and then trigger effect from there with a whole lot of other tests.  Officially on June 7th I was diagnosed with Stage III Medullary Thyroid Cancer (MTC). 

For those of you who may not know me as well as others - I am quite a researcher and Google freak so needless to say I think I knew more than my doctor about this rare from of thyroid cancer.  And I do thank god everyday that it's not the even rarer kind (Anaplastic).  Thyroid cancer overall has a high prognosis with it but unfortunately the Medullary type does not and this type also does not normally have any treatment plan except for surgery. 

I underwent my first surgery on July 31st - this surgery was 8 hours long and consisted of the removal of my thyroid and basically everything in the left side of my neck.  The surgery went very well and based on the initial report we felt very lucky.  Sad to say after the surgery/recovery and my first follow-up appointment we found out that the cancer was what the call "outside the margin" so I was then restaged to Stage 4a and we knew at the time that my cancer would come back but exactly where and when no one knew.  MTC normally follows a slow growing path so normally you can go a year or years without anything showing up again.

With MTC there is a blood test that is run (calcitonin) along with CEA that can show what your cancer markers are.  A normal persons level is 0-10, prior to surgery mine was 3000 (and I have read of peoples being 30,000 or more) but overall 3,000 still high.  After the surgery we were advised that my levels would most likely never be normal but if I was around 100 that would be good.  I had my first blood drawn in Oct and found that my levels were in the 800's so at that time we knew that there would be more surgery.  I was referred to a specialist at U of P and on my first appointment another ultrasound was performed.  We found out that day that there was more in the lower portion of my neck and chest area and to pretty much prepare for another surgery.

(Some other things going on in between, but really trying to stick with the highlights).  In Dec. I meet with the new surgeon to discuss my options.  I also had another MRI that morning in my abdominal area).  I had previous ones done in my chest and lungs too (lungs clear, chest not).  We found out that there were more infected nodules/lymph nodes in my chest and neck and the consult went pretty weird but ok we thought this guy may be good but he's not Dr. Moses (who at that point had shown me such wonderful care I am sure I was being critical to anyone else ).

The next day I was called by my new doctor and was told that the second MRI (abdominal one) had not come back so good and that the cancer had spread to my liver.  WELL being the Google/researcher freak that I am I KNEW what this meant and it wasn't good.... I was told to report to U of P the next day to discuss my options. 

I think from here you are all pretty caught up.  And this is where I begin my new treatment.  Surgery is no longer an option (or at least for the liver) as number one, they don't know if you can even survive the surgery, number two - transplant are not really an successful procedure for cancer patients.  So here we will begin trial drugs and see what happens.  If the tumors in the neck/chest continue to grow than surgery my be inline for those but basically at the present time they are not the concern, the concern is the liver and WHY in the "normal slow progression" is my growing at a more progressive pace???  I guess it is not our place to question why right, only to live and to learn.

For those who have commented so far on my first blog - I thank you.  I was thrilled to see responses today.  I question sometimes the you’re so strong as I don't know if I am... I take it one day at a time.  I have my moments when I question WHY - I have moments when I don't want to die but mostly I have moments where I worry about leaving my family and friends behind.  BUT I DO KNOW THAT I WILL NOT GIVE UP.... and with all of you by my side I know giving up is not an option. 

Love & Peace to all

Sue