Thursday, January 16, 2014

18 months, and why I blog

Tomorrow is 18 months since I was diagnosed.  In some ways, it feels like a lifetime ago, but in others, it feels like time has flown.   Many people may be like "what's the big deal about 18 months?".  Well, for me, it is a big milestone.  When I accidentally stumbled upon those stats that my oncologist said to never look up, I discovered that the average lifespan is 18 months for those diagnosed with stage 4 breast cancer from the start.  I've alternately regretted and been happy that I saw those stats.  I'm a competitive enough person that knowing about & trying to beat some of those stats pushes me forward daily along with ensuring that I treasure each day upon the path to each stat.

I know that stats are just numbers, and they may be especially wrong in a case like mine. A very odd thing about cancer stats is that they only keep track of what someone is at initial diagnosis and then indicate whether they pass from metastasized cancer or not upon their death.  They are then still classified in the timeline stats with that initial staging.  Though I was truly stage 4 from the beginning, they initially thought I was stage 1, and most, if not all, of the initial material sent to organizations such as American Cancer Society that track those numbers stated stage 1.  We don't know for sure whether that was ever corrected to indicate stage 4 or not.  Is there a whole other category of people out there like me that they aren't really keeping track of?  My connection with people on one of the breast cancer forums seems to imply that there could be, but who knows?

I am just incredibly happy to hit this milestone with my health being as good as it has been recently. My stamina is still increasing and surprising me weekly.   I do go on Tuesday of next week to get tumor markers checked, and as always, I appreciate your thoughts and prayers.

Something that has been on my mind…….
Blogging and tweeting by cancer patients has been been all over the news in the last week after a blog post by Emma  Keller in the Guardian, which has since been removed, and a subsequent article by her husband, Bill Keller in the New York Times.  In these pieces, the questions are raised about whether a particular cancer patient goes too far in her tweeting of information about her cancer  along with whether this cancer patient who is a young mother should just "go gently" like their elderly father/father-in-law rather than using a lot of health care money for treatments.  This is a very thumbnail sketch of how I perceived the pieces, and many others have written commentaries both in support and criticism of the Kellers.   I mention it because the uproar over these pieces have really been on my mind and made me think about why I blog.

1) I blog because I want to share information with my family and friends quickly and easily.  It is so much easier to type it here once than to have to repeat it numerous times.  This way I can also choose how much and what I want to share at any given time.
2) It is therapeutic for me to to share the information.  I am a talker, (I know you're shocked!) and talking things through, or writing them, helps me to process and come to terms with them.   I may have shared way more than some people would have felt comfortable doing themselves, and I understand that what I am doing is not for everyone.  That is okay, but it IS the best way for me to deal with it.  If getting this type of diagnosis does anything, it should allow the person to be free to handle the situation in the way that works best for them.

3) Hopefully, it will educate and help people.  I still remember when the word cancer was like a dirty word that you whispered.  I think that things are more open about it now, but it can still have that type of feeling associated with it.  I want people to understand that there can be "living" with this type of diagnosis, and to understand that there are many options available.  Each cancer, like each person, is individual.

A lot of people don't like the terminology of "fighting or battling" cancer because it could imply that someone failed if they "lose" their fight.  I've heard other terms such as "thriving", but the idea of it being a fight has not ever really bothered me.  Right now, we are lucky that we are able to fight with just a little sword of my anti-hormonals, and the enemy is not really on the horizon, or at least I hope that it isn't.  At some point, we may have to pull out the big guns again and/or possibly decide the time is right to lay them down.  I hope that at any of those points people will understood that I have reached those decisions with great input from my doctors, family, and friends, and that no one will feel that my decisions or blogs need to be scrutinized in the papers as happened in those articles.   Until they tell me otherwise, I will follow what the poem by Dylan Thomas that  Mr. Keller misquoted actually says which is: "Do not go gentle into that good night….rage, rage, against the dying of the light".  Yes, I know that may seem at first I in contrast with my "being still" focus, but I don't think it really is.

Side note: Since the poem and wind ensemble work have been in my head since I read those articles, I have to share  a link to a recording of the piece: .  (Yes, I am that band geek where the band work came to mind before the actual poem did)

I hope that I never offend people by what I write, and I hope that you will always understand that it is being done for the reasons above.  The support  that I've gotten from people has really been a blessing to me.

Wednesday, January 1, 2014

Goodbye 2013, Hello 2014!

My 2013 was a very full year with a lot of ups and downs, and December definitely had a lot going on!
I just realized that I never actually updated my PTscan results here (just on Facebook).  My scans showed no evidence of disease (NED) still, which is wonderful!  

Once my on-campus classes ended in early December, I went to visit family and friends in the Nashville area.   I'm very thankful that I got to have a quick lunch with Carole & Laura in Huntsville on the way up.  Laura, Cliff, & Mason thankfully made the trip over from Memphis a night early so that they weren't iced in; it was great to meet Mason and spend some good time with them. 

 One of my cousins had mentioned earlier this year that the next time I was up we needed to go the Country Music Hall of Fame which I'd never been to.  I was glad that it worked out that Leslie had a day off where we could go.  We did the Hall of Fame and the Studio B tour.  This picture is of us with the piano played on so many of the hits recorded there. I really enjoyed the Reba exhibit the Hall of Fame had as well.  Seeing her in concert is on my "to do" list, but she doesn't have any concerts coming up that I could make right now. 

My aunts went with me to visit Lawrenceburg where my maternal grandparents lived, and we took a wagon tour and shopped in the Amish country there.  

The "Barlar Christmas" dirty Santa/ white elephant gift exchange and brunch took place while I was there, and it was great to spend time with all of my cousins, aunts, and uncles that were able to attend.   
 The kids getting ready to open their presents (real ones, not dirty Santa). 
 Lylah loved her new tea set!
 I spent a lot of time trying to get a picture of Lylah with her cousin Wren, but this is the only shot that actually had both of them in it.  Those little girls are on the move!

Spending a week in Tennessee, I was able to spend lots of fun time with Dave, Jenn, & Lylah.
     Helping Lylah create some of her first "selfies"
 Waiting to see Santa!
 Christmas Parade - It was very, very cold for this FL girl!

 Picture with Pam Tillis after the parade thanks to Dave!
 Lylah playing with my present (drum with instruments inside & Let's Make Music dvd).  She loves music, and seems to really enjoy playing with it.  I just hope her parents are still talking to me a few months from now, if she continues to play it a lot!  

I got back home and had to finish up some last things with my online classes. Then I took Ty & Casey on a trip to Sea World where we spent the night and then went to ICE! at Gaylord Palms the next day.  It was really nice to spend some good time with them; I hadn't gotten to do a lot of that this year.

The end of December also brought a new cut and style for my hair.  It is crazy that you have to grow hair out for 8-10 months to then cut it in an asymmetrical pixie cut, but now I can let it grow a little longer while still keeping a true style, hopefully.

Christmas was in Tampa with the family that is here.  We do presents usually on Christmas Eve and then stockings on Christmas morning.   Every child needs a drum & instruments which is why I "blessed" Drew and his parents with one too. You can take the band director out of the classroom, but…………   He needs to get a little bigger to fully enjoy it, but he already seems to love music.
 Isn't he such a cute little man!
 Patiently waiting for their turn now that they aren't the youngest 
(or as Casey would jokingly say "the cutest") any more.
 We are taking a cruise together over Spring Break; so, most of the presents were to help pay for that.  Ashley is a lot more creative with how to give money than I was with my checks, though, lol! 

 Drew on Christmas morning; Such a cute little elf! 

My 2013 ended much the way it began at a doctor's office.  I had Barrett's esophagus and severe reflex issues 13 years ago that resulted in a surgery that really helped and healed all of the problems, but I have to have EGDs (endoscopy of esophagus & stomach) periodically  just to check on everything. A few years ago, we saw that the surgery repair was starting to loosen, and I was started back on reflux meds.  During chemo, my reflux became really bad, and we had to significantly up my medication along with sleeping on a wedge pillow, etc.  So, I knew it was important to do even though the only day that my EGD  could be scheduled was New Year's Eve.  

Fortunately, my esophagus looked good! Unfortunately, my surgery repair has almost completely loosened, and apparently my stomach still had a large amount of food in it 8 hours after eating anything.  (Food should leave your stomach in 90min-4 hours generally).  I have had some issues with motility in the past, but they had been cleared up ( we thought).  Apparently, the chemo I was on can cause motility issues; so, I guess I shouldn't be surprised it would affect me that way since I have a tendency towards it anyway.  That means my 2014 gets to start like my 2013 with more tests to see just how bad the problem is and decide on medications,etc.  Doesn't eating radioactive eggs and having them track it through your stomach for up to 6 hours sound fun?!? It is a bummer to learn of one more thing to deal with, but if this is the worst medical problem I have to face in 2014, I will be very thankful!  Since my esophagus is good, the doctor doesn't think I'll need to do surgery again any time soon, at least.

I hope that everyone has a wonderful 2014, and that any resolutions you make will be kept.  My resolution is to truly "live" every moment and be thankful for all of the blessings in my life.   It will be time for a 3 month check-up of the tumor markers again on Jan.21st; so, as always, I would appreciate your thoughts and prayers that things will stay good!  HAPPY NEW YEAR!