Thursday, April 17, 2014

Good news/ not-so-good news

The Good News first -- My tumor markers have stayed the same and are still in the normal range.

The Not-So-Good News --
part 1)  I have to have a biopsy next week on Tuesday for a rash that has continued to appear/disappear ever since chemo.  My oncologist does not think it is cancerous, but she is worried that it keeps coming back.  Hopefully, this will

part 2) My liver enzymes had a fairly big increase in this set of bloodwork with one that had been normal becoming high this time.  My liver enzymes were barely increased when my liver was full of cancer, but they have been steadily rising in the past year which seems a bit backward.  It does make us quite a bit nervous as to what is causing it.  I'm going off of any supplements and pain-killers along with reducing my only new med in the last 3 months until we repeat the bloodwork in a week & 1/2.  Just hoping that it will decrease from that, and that we won't have to take a next step.  There always is the possibility that something is brewing in the liver and my tumor markers just aren't being reliable, but with the good scan in December when the enzymes were already going up, that doesn't seem to be very likely.

So anyway, it is a bit hard to be too excited about my markers when there are several other unanswered questions.  Thank you for the prayers for good tumor markers, and please pray that we will both get answers & get them quickly on these two other concerns.   Have a good weekend!


Monday, April 14, 2014

Marker time again

Marker time again…..I can't believe it's marker time again…. praying those markers stay in the normal range for me…..oh,oh,  it's marker time again (sing to tune of "On the Road again" by Willie Nelson)

I really can't believe that it has been 3 months.  I must be getting used to this more & more because a week and a half ago I had no idea when this appointment was instead of being able to tell the day, hour, & minute of the next appointment from the last moment of the previous one.  The appointment is tomorrow, Tuesday, and I should have some answers within 48-72 hours.  Of course this past crazy weekend helped to keep my mind off of it as well.

For the bad first, I got the wonderful news this past weekend that there has been another incident courtesy of the  identity thieves that I've dealt with for the past 7 years.  If you've ever dealt with identify theft, it is the "gift" that just keeps on giving.  At least, I had the police report and documentation to show that this was probably the same people, and hopefully that combined with the police report being filed will be enough to take care of it.  So, dealing with that kept me pretty occupied in an "oh, so fun" way.

Thankfully, there was good as well in getting to cross some items off on my living list this weekend.  I've lived in Florida for 38 years, but had never stepped foot on the northern gulf beaches.  So, this past weekend I got to enjoy some time on Fort Walton beach along with seeing my wonderful friend, Liz.  I just wish we'd managed to get a picture sometime over the weekend, but many memories were made which works just as well :)

Hopefully, you all had wonderful weekends, and I appreciate your prayers for a good report!

Monday, March 17, 2014

March of trips

Life has been very busy this spring term because I've been teaching 11 classes (2 on-campus & 9 online).  Two courses will end this weekend, and I'll get a little break until one starts up again the 2nd week of April.  I am thankful that I am able to work this much, and it is helping to finance some more trips which are coming fast & furious during March.

At the end of February/ beginning of March, I was able to travel with my parents to  Nashville for my niece, Lylah's 1st birthday party.  It was great to be there for that party along with seeing David, Jenn, and the rest of the family in the area.  Who wouldn't have a wonderful time with this precious girl even when she has crazy peach juice hair?


The spring break for FC and Hillsborough County lined up again; so, I was able to knock another few places off my list with a family cruise.  We went to Honduras, Belize, Costa Maya, and Mexico, and I enjoyed getting to snorkel on the 2nd largest barrier reef in two different locations.  I also had the chance to see 2 different sets of Mayan Ruins which was especially interesting because it ties into one of the Humanities courses that I teach.
 Here are some pics from the ground of the Altun Ha ruins

Here is a pic of the view from the top, and Dad & I after climbing up the above temple.  
It was a hike, but I'm so glad that I did it!

Add in some cuddle time with baby Drew and beautiful beaches like the one below, and 
how could it not be an amazing vacation?!?!?!!


My March of barely being home will continue later with a convention in Chicago that has the added bonus of getting to see my college roommate Jill along with maybe finally getting to do some touristy things there.  That will be followed by a trip to San Antonio & Austin to see another friend and go to a concert by one of my "living list" musicians to see.   At least at the end of this month, I will have crossed off 5 more places/things to do from my list.  Again, I am so blessed that my work is primarily online which allows me to get to have these wonderful experiences.  I hope everyone else is having a wonderful March!















Thursday, February 6, 2014

milestones, markers, & reunions

I've fallen behind on blogging, but I guess that just means I'm busy living :)    The last time I wrote, I was excited about passing by that 18 month milestone.   I was blessed to have family & friends that kept me busy throughout the weekend by making us brunch, going out to eat, and shopping.  I loved this banner that Shannon made for me! (In case you can't read it, it says Happy 18 Months!)

The following Tuesday, when I had my oncology appointment and markers taken,  I had the opportunity to give my oncology center 18 blankets to hand out to patients.  The two of us who started "covered with care" are with the same oncology group, and we had decided to branch out to our centers when we were able to do so.  The center knows our primary goals, but has also been told to feel free to give it to someone who needs it or would benefit from a blanket as well.  Being in the Tampa area, we especially wanted to be able to help those here.  We are excited about being able to expand in this way, and  I will be adding this information to the covered with care page in the next day or so as well.  We are still taking donations of any type of blankets, and there is more information at coveredwithcare.blogspot.com. 

 It was relaxing for me to know that I was doing something for someone else rather than worrying about what the markers would say as I started that appointment.  Thankfully, my markers have continued to decline in the normal range.  I was able to breathe a big sigh of relief until we check them again in 3 months.

I don't understand how it could possibly be my 20th reunion for Florida College because I don't feel old enough for that to be possible. (Well, some days at least!)   Yet, somehow it apparently is!  {For those unfamiliar with FC, it was a 2 year college when I attended, and the reunions are always held during their annual lecture week.} On Saturday night, we had our reunion dinner. It was great to see everyone, and we missed those of you that weren't able to be there!  The group picture is from that night.  On Monday night, I helped host a get together at my parent's, but unfortunately there were no group pictures taken.  

I was blessed to have Carole stay with me for the reunion weekend.  We've gotten extended girl time twice this year; thanks Billy for making that possible!  Now I just have to figure out how to add the many trips to see people that couldn't get down for the reunion or who live in fun/new places to visit to my "living list".  


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: http://www.youtube.com/watch?v=2kvvyjzjCi0 .  (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!

Saturday, November 30, 2013

PTscan Tuesday & thankfulness

I will be having a PTscan this Tuesday to see whether I am still NED.  I know that my tumor markers are still normal; so, I have a sense of peace going into this one.  If cancer has returned, then at least we will have caught it early, and whatever will be will be.  With that said, I still would appreciate your thoughts and prayers about the scan.

With thanksgiving this week, I thought I would pass on a few things that I am thankful for:

1. Knowing that my liver was clear of cancer in 2008 -- That may sound weird, but I've had several people ask whether my stomach problems about 5 years could have been related to the cancer.  Last week, I went to my gastroenterologist, and he confirmed that I had a ctscan in 2007 & 2008 along with an MRCP of my liver in 2008 that showed that it was clear.  I didn't realize how much that had weighed on me as to "did we miss something back then?" until I got those answers and saw all of those reports.  It was like a cloud of guilt/worry lifted off of me.  Also, it tells me that it grew in a 4 year timeframe or less which just reinforces how lucky I am that things were addressed and done as they were.

2. It has been 16 1/2 months, and I am still NED (at least for right now) -- I don't dwell all the time on the numbers/stats, but sometimes something happens to remind me of how long it has been,etc. This just makes me feel fairly confident that my name will not be a part of at least that first 18 month stat.  I will probably be doing a little jig on January 17th when that day hits. ( Of course, it would be an FC legal jig.)  I feel very strongly that the prayers of so many people have been heard to get me to this point, and I can't neglect mentioning being thankful for that.   I am feeling really good right now, and I am so thankful for that as well.  

3. I have gotten to spend time with or will be spending time with soon so many friends and family members. -- We all have so many friends & family members that we don't see very often, and it is very important & precious to me to get to spend some time with them whether it is a quick meal or getting to spend several days together.  Several people have taken time out of their schedules in order to make sure that that can happen recently, and I truly appreciate that. 

While that isn't the list of 30 that so many have done recently, I am thankful for so many things, and these are just the "biggies".  I hope that everyone had a wonderful thanksgiving.