Saturday, March 16, 2013

The nitty-gritty of my diagnosis

I went to lunch with a friend this week, and she told me that she thinks most people don't really understand what I'm dealing with now that I'm done with chemo and surgeries. She encouraged me to just be really honest here and lay out the stats and everything else because she had overheard people talking about how great it was that I'm done with treatment and fine now.  She thought it would help people to understand my new reality and where I am coming I'm going to follow her advice.

I don't want to be a Debbie Downer, but the reality is that I still have cancer.  The stats for women that are originally diagnosed at stage 4 with breast cancer is that the average lifespan after diagnosis is 18 months, 10-18% make it 5 years, and 2% make it 10 years.  While I know stats are just stats, that is a black cloud that hovers near or over me all of the time.   In my appointment yesterday, my oncologist discussed my future which included talking about how those stats are outdated for several reasons:
1) the medicine that I am on now has only been out for about 10 years
2) those stats also don't differentiate by age, whether someone took treatment or not, or whether they already had lots of health problems and/or died from something different than the actual cancer
3) I don't fit the normal mold of someone my age who presents with stage 4.  Most of the time that person would have found the cancer because of problems with the liver; so, the liver would have been further gone than mine was which also means the cancer would have been more progressed as well.

Many advances are being made all of the time so I know that there is more hope today than yesterday.  At the same time, my oncologist did say that most people only get months of stability (not the years I was hoping) on their first anti-hormonal.  There are several other anti-hormonals and combinations of anti-hormonals that we would try before going back to traditional chemo.   I had tumor markers done yesterday which will give us an idea of whether I'm stable or had regression/progression over the last 8 weeks.  Tumor markers measure an enzyme in the blood that is put off by the cancer so they are not an exact representation, but mine have been pretty reliable so far.   We will be doing tumor markers and a PTscan again in 6 weeks.  As of the last scan, I still had active cancer in my liver.  Even if the tumor markers come back in the normal range and/or the scan comes back as no evidence of disease, I will still be considered to have cancer, but I can  be happy to have a little reprieve of activity for a time.

  I've had people say "don't be pessimistic" when I mention hopefully being around in 10-15 years or something like that, but they don't realize just how very optimistic that is being. I have faith that I will be around for a long time.  I don't believe in the stats or let them define me, but they have definitely impacted my life.  I feel like I am living the Tim McGraw song "Live like you were dying", and I am trying to cross as many things off of my list now and this summer while I know that I feel good and   probably won't be having to do chemo.   I have a big trip list, and a short trip list. The short trip list is primarily things around Florida that I haven't been to or don't remember going to as a kid.  I crossed my first one of those off last Friday when I went to Bok Tower Gardens.  It was such a beautiful and peaceful place, and I highly recommend it if you haven't already been there.

  I am still me and  feel pretty good right now,  but I do have a new normal and path have been drastically shifted.  I don't think the same way about many things as I would have 8 months ago before diagnosis. I am at peace overall with my new normal, but there are still naturally some ups and downs with all of it.  The week before markers or a scan, I tend to have a lot of anxiety until I get answers.  I should have answers about yesterday's tumor markers sometime on Monday.  Again, I didn't lay all of this out there to be a Debbie Downer or to freak anyone out, but I just want people to understand the nitty-gritty of what I'm dealing with.


  1. You are certainly not a Debbie Downer. Your attitude is such an encouragement to me. I love your courage. Thank you for taking the time to write this post. It is very helpful to understand and I can pray more specifically now. I hope you get to do a TON of things this summer and love every minute of it! Love and prayers!

  2. No debbie downerness at all. It's good that you say things like they are, Nancy. Thank you for writing this out and showing several sides to your situation, I reckon it will help many people understand what mets really means, and how live it to be lived in the NOW. Happy travelling :) ~Catherine

  3. Thank you for sharing your thoughts. I think of you. Loved the hat you wore to the Lightning game btw!