Monday, March 18, 2013

tumor markers & my lists

I got the results of my tumor markers this morning.  My CEA test is down to 7.2, and it had previously been 13.6.  The normal range for this test is 2.5 and below.  My CA27-29 test is down to 40.9, and it had previously been 66.9.  The normal range for this test is 38 and under.  This medicine is working and  things are still going in the right direction.  Or to quote the text that my brother David just sent me "You can almost say you are normal....and you've never been normal!"    I will gladly take any sign of things regressing!

Several people asked about my big and short trip lists so I thought I would share a few of the things that are on each.   Some of the places on my big trip list may never happen, but it doesn't hurt to dream right?  My lists were made as things came into my head rather than in any particular order or importance, and I keep adding things as they come to mind.  Most of the places on the short trip list are in Florida, and it has either  been a long time since I've gone, I didn't get to spend much time there, or I haven't ever gone to them as I said in the previous blog.  If you know of other interesting places in Florida or really anywhere that I should make sure to get to, please let me know :)

Big Trip List --
* New York/ Broadway show trip
*British Isles
*Greek Isles
*Back to Hawaii to see other islands not covered on first trip
*Las Vegas to see Cirque D'Soleil shows
*Grand Cayman
*Australia/ New Zealand
*Paris/Italy -- my parents may be leading a trip in 2015 that will cover this so a big goal is to go on that trip.
*Myrtle Beach/Charleston - I'm planning to go stay in Myrtle Beach for a few nights in one of our timeshares before my  yearly North Carolina trip with Jennifer, Mark and the boys. Hopefully, I can work Charleston in on the way up.

Short Trip List
*Key West - this should be getting scratched off over Memorial Day weekend
*Ringling Museum
*Dali Museum
*Kennedy Space Center - this should get scratched off on April 20th
*Mount Dora
*St Augustine
*Panama City / Destin
*Weedon Island Preserve
*Discovery Cove, or somewhere,  to swim with dolphins

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.

Thursday, March 7, 2013

Watched hair does not grow

Like a watched pot not boiling, watched hair does not grow, but I'm still staring at it in the mirror multiple times a day to see if it is maybe any longer than it was the time before.  What am I expecting?  That it will magically have grown an inch in the last hour?  I know the stats that hair grows about an inch a month. Mine is somewhere between a 1/8 to 1/4 of an inch right now. I've been told that having the surgery right after chemo may have slowed the growth down some as well.  Even if so, it was still worth going ahead and doing it.   Your hair can grow back a different color and/ or different texture than before.  So far, mine seems to be a lot lighter than it was before.  I prefer to believe that is because it is coming back in blond, not that it is more white/grey than before.  I was blond as a young child so I'm just going to enjoy my delusion for a little while, lol!

As many have noticed, you never know what I might look like these days.  I rotate between blond, brunette, and/or a hat pretty regularly.  I figure that it is the one perk to all of this that I can change my hair color and length at whim right now.  It is a little weird to have to text someone that I'm meeting at a restaurant that "I'm blonde today" so that they can find me, though!

My recovery from the last surgery has been good, and I have what will hopefully be my final follow-up for that on Tuesday.  I'm expecting that she will lift the restrictions on what to lift and activity at that appointment.   Next Friday, I will be seeing the oncologist re: the medicine that I started a month ago, and we will also run tumor markers. Those will take a few days to get the information from. This week I began teaching my other on-campus class, and though I am pretty tired, at least I'm basically back to real life. That is a very nice feeling!

My biggest stress right now is dealing with insurance and billing, but hopefully my appeals will work so that all of that is taken care of.  Also, it seems like every time I get stressed out that something happens to remind me that He has it under control, and I just need to put it in His hands.  I know that is a result of the many prayers that have gone up for me, and I am so appreciative of them!

In other big news, David & Jenn (my brother & sister-in-law in Nashville)  had their baby on Monday.  I think my new niece, Lylah Ann,  is absolutely adorable so I had to share a few pictures!