Welcome to my world

I am a wife, a mom, a daughter, a sister and a friend.
I've learned that who you have in your life matters more than what you have.
Thank you for stepping in to my world!

Friday, June 8, 2018

Kicking cancer's ass - day 1742

After what seems like months and months of nothing really to talk about, I have news!

First.... I had my six month check ups with my oncologist and my surgeon.  All is good, come back in another six months.  Yay!
Second....I had a follow-up CT scan to recheck some lung nodules that were on my scan in September.  Nothing new on this one and everything is stable!  Yay!
Third...I met a new doctor today.  I took the first step towards doing something about my lymphedema.  I'm OVER it.  It's ugly.  It's uncomfortable.  It's not responding to anything I do for it.  Sometimes it hurts.  It puts me at a greater risk of an infection, and developing serious complications from an infection.  So... enough is enough.
Fourth...Today I had an MRI of my abdomen to screen for pancreatic cancer.  I'm supposed to have this every year, and as long as nothing shows up, I don't have to see that particular doctor.  I won't know results until next week, but it feels good to have that done.

Hubby and I met with a plastic surgeon who specializes in microsurgery for lymphedema.  And when I say micro, I mean MICRO!  We're talking performing surgery on lymph vessels less than half a millimeter wide and using stitches thinner than a strand of hair.  Better him than me!
Anyway, after measuring both arms, the nurse quipped, "Well, in case you couldn't tell, your arms are two different sizes."  ha   No kidding.

First up will be a test to see where the lymph pathways in my hands and arms lead.... if anywhere.  This is called radionuclide imaging of the lymphatic system.  Basically I'll be injected with radioactive dye and then scanned to see where it goes and highlighting blockages.  
After that, I'll meet with Dr C again to discuss a plan.  He thinks I'll be a candidate for "lymphaticovenular bypass surgery".... during which he'd redirect my lymph fluid from the blocked areas to open vessels (veins).  It would be a 5-6 hour surgery, overnight stay, and then a month of babying my arm (basically keeping it elevated and not using it at all).

So.... more tests.  Probably more surgery.  Definitely more trips to Dallas.
Not a fan of any of those.  BUT.... I have hope.  I spoke with a friend of a friend who had this done, and she said it has been LIFE CHANGING for her.  

I have to stay realistic.  It's not a cure.  There is no cure.  And the results vary.... from zero improvement to about a 30% reduction.  I'll take it.  

This surgeon is in the same office as Dr T who did all of my reconstruction and remains one of my favorite doctors.  I have ultimate confidence in the team at UT Southwestern, so I'm going to go forward with this and see what kind of plan we can come up with.  

The following is a post from last June when I first went down the road of treating lymphedema.  Not much has changed.... except I am not settling for suffering with this any longer if I can help it.  
Fingers crossed!

Do you know what lymphedema is? 
Before cancer invaded my world, I had no clue.

Let me educate you.

Lymphedema is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.

Since I had tons of lymph nodes removed during my initial surgery, my lymphatic system on that side is compromised.  With no lymph nodes, the lymph fluid has nowhere to go, and it can build up.

I've tried to be diligent about preventing it to the best of my ability.  I wear my compression sleeve when exercising or out in the heat, on an airplane or if I feel the tiniest bit of swelling.  I make sure to always get my blood pressure taken on my right arm, and avoid needles (shots or iv) on the left side.  In three and a half years I haven't really had any issues.

Cancer really is the gift that keeps on giving.  Aside from the fear that every ache and pain, cough or rash could be cancer, there is also the possibility of a surprise lymphedema diagnosis years later!
I saw a lymphedema specialist Monday and she taped my arm until the wrapping supplies came in.  Well...... they came in and I saw her again today.  Lucky me.

I have five, count them, FIVE layers of stocking, padding and bandages on my arm.  And I get to do this every night for the foreseeable future.  BLAH.  I'm lucky that my therapist took pity on me.  Normally a patient would wear this 23 hours a day.  Since my lymphedema isn't extreme and is mostly localized in my forearm and hand, I can get away with wrapping at night and wearing my sleeve during the day. 

It's a very good thing that I've never broken a bone.  I would NOT be a good patient if I had to wear a cast.  My son had to unclasp my necklace tonight because my arm wouldn't bend far enough to reach it.  I had to stretch a rubber glove over my hand to cook dinner.  I have an ITCH in the crook of my elbow.... that I can't get to!  Oh, and I live in Texas and it's SUMMER.

We are leaving tomorrow for a road trip including a softball tournament, visits to two different friends in two different states, and ending up in New York to see my parents.  I will be traveling with my little bag of wrapping supplies and hope between me and my son we can figure out how to duplicate this crazy contraption on my arm.... every night.

I know there are much worse things I could be dealing with.  It's uncomfortable and restrictive and annoying..... but not life threatening.  I'm not sick, I'm just swollen and achy and pissed off that this happened.  

Just goes to show you you're never really "in the clear" from anything cancer-related.

I guess I get to add another color awareness ribbon to my profile.  I should go jewelry shopping.  😄

Tuesday, May 29, 2018

Kicking cancer's ass - day 1732

If you don't have at least a little bit of my daughter in your world, you are missing out.

Her life may not be exactly rainbows and unicorns and magic, but it's pretty darn close.  

If you know my K, you know someone who loves with her whole heart.  She loves her friends, she loves animals, she loves her teachers and she loves her family.  She has the purest heart of anyone I've ever met in my 45 years on this earth.

If you know my K, you know someone who cries at the drop of a hat, but who also laughs with abandon.  She's quirky and funny and she makes me laugh every single day.

If you know my K, you know she loves playing softball and playing the clarinet.  She loves math but hates science.  She's an honor roll student, a talented artist and she's not afraid to try new things.

If you know my K, you know she loves going away to church camp.  She's a nature girl at heart and is happiest barefoot in a stream or dancing along the beach.  She sings out loud in the shower and is the best concert buddy I could ever ask for.  

If you know my K, you know she has a shelf full of trophies and medals for everything from softball tournaments to a tractor pull to UIL Editorial Writing to Destination Imagination.  

If you know my K, you know she loves horses, hates running and shares my love for Pure Water iced tea.  She is a girly girl who loves bling, but who doesn't bat an eye about spending the day covered in dirt from the softball field.  She loves to blurt out random facts and tell me all about her favorite YouTubers.  

A dozen years ago (tomorrow) this beautiful girl came into my life and nothing has been the same since.  K is beauty and emotion and light and fun.  She's the friend I wish every girl could have, and I'm blessed beyond measure that God chose me to be her mom.

Happy 12th birthday chickie.  Best Kelsie Ever!

Tuesday, May 8, 2018

Kicking cancer's ass - day 1711

This morning I was helping K straighten her hair (because "it's frizzy") and as she was holding the already straightened sections out of my way, she looked in the bathroom mirror and said, "Look Mom, I can make my eyes big without moving my eyebrows."   😆

Friday, May 4, 2018

Kicking cancer's ass - day 1707

Survivor guilt:  a particular type of guilt that may develop in people who have survived a life-threatening situation. Individuals who believe it is unfair that they survived when others died.

As a cancer patient, and now a cancer survivor, I have had plenty of "why me?" moments.  I don't think there's a person alive who is diagnosed with cancer and doesn't at least THINK those words.  Since day one I have tried to not have too many woe is me moments.  I'm not the first 40 year old woman to get breast cancer.  I'm not the first mother of young children to lose her hair, her breasts, her normal life.  I'm not the first wife to ask awful, stressful, even disgusting things of her spouse in the course of cancer treatment.

Been there, done that, and so have many women before me.

I'm also not the first cancer survivor to lose friends and/or family members to the disease and ask that same question.  Why me?  

The real question, though, isn't "why me?".  It's "why THEM?"

I've written a lot about my friend Allyson.  She was my very first mommy friend here in Abilene.  She passed away from ovarian cancer four years ago.  Why HER?  
Allyson was the most devoted wife and mother.  Ever.  Seriously, she put most of us to shame.  She was kind, loving, funny, creative and faithful.  She was the best Christian woman I knew, so I'm not surprised that God wanted her with Him.  What I can't understand was why someone like her was taken away from her three boys at such a young age.

You all know I lost my BFF this year.  Like Allyson, Trudy fought a long battle with cancer.  She had survived cervical cancer and made it to the five year mark after her breast cancer diagnosis.... so why HER?  Trudy lived for her children.  She LIVED for them.  She was the most unselfish person I've ever known.  She would do anything for someone she loved, and almost anything for someone she didn't love.  She was always up for anything.  She loved her friends, she loved her husband, and she really, really loved her kids.  

Two of the best friends a girl could ever ask for..... taken way to soon.  WHY THEM????

I've mentioned my KCA sisters before.  We are a group of women who underwent cancer treatment at the same time (starting in Aug/Sept of 2013).  We started as a group on breastcancer.org, and have since moved to a Facebook group.  We have 47 members, but probably only about half that many post on a regular basis.  Some of us have met others in the group in person and formed even closer friendships.  Most have not.  But we are sisters.  We were in the trenches together when we were all at our lowest.  We encouraged each other.  We prayed for each other.  We laughed with each other.  We for sure cried with each other.  

Shortly after our group moved to Facebook, we lost our first sister.  Lynn.... a.k.a. "VintageGal" became sick very suddenly, and passed away way too quickly.  It was a blow to our group.... the first one of us to lose the fight.
Last year we lost another sister.  Nichole was a loving wife and friend.  She taught yoga, rode horses and ran half marathons.  I met her in Vegas when our KCA group got together the year before.
And now..... we are losing another.  
This is Stacey:

Beautiful.  Young.  Vibrant.  Smart.  Funny.  


Stacey has been fighting a breast cancer recurrence since the stupid disease came back in her CHEEK!  Seriously.  
She has been honest and forthright about her battle, keeping us updated about everything she's going through.... until she couldn't.  
We learned today from one of her friends that Stacey is at home in hospice care.

Why HER??????

Don't get me wrong, I am so damn grateful that I wake up breathing and healthy every day.  I cherish every single band concert, softball game and dinner date that I get to have with my family.  I don't ever feel that I shouldn't be a survivor because so many others that I know were not.  I don't ever ask "why me?" in terms of me being alive.... but I do ask "why them?" every time I'm faced with the loss of someone else I care about.
Frankly it's getting old.
I don't know why a thirty-something mother who teaches preschool and loves Jesus ends up dying.
I don't know why a forty-something mother who gives everything and expects nothing ends up dying.
I don't know why a young woman endures cancer treatment and the death of her husband, only to suffer more and end up dying.
There are no answers.  There are no words.
Just tears.  And prayers.

Wednesday, April 11, 2018

Kicking cancer's ass - day 1684

Since last fall, K has been working with six other kids in her grade as part of a DI (Destination Imagination) team.  

For those of you unfamiliar with DI, here's a little information:

The Destination Imagination Challenge Program is a fun, hands-on system of learning that fosters students’ creativity, curiosity and courage through academic Challenges. 

In laymen's terms, students form teams of up to 7 members, select their preferred Challenge and work together to develop a solution to the Challenge. They research and prepare how they want to compete in their chosen challenge, and then they do all of the work involved...from writing a script to building all props to designing costumes.  Oh, and all under a team budget of $150!  Team managers and parents can not "help" in any way other than to supervise and mediate. 

The second part of the competition is called "Instant Challenge".  Teams can practice different ways to attack an instant challenge (IC), but they can't really prepare for it - they don't know what their challenge is until they compete.  Sometimes it's a building challenge, sometimes an improv skit.  It's a think on your feet, work well with your team and accomplish something on the spot in a few short minutes kind of thing.  No pressure. Ha!

This is K's first year to participate and we had no idea what we were getting into!  Since October her team (Metallic Chickens) has met weekly (often several times a week) working on their challenge.  They chose the Scientific Challenge:

Their unlikely location?  An ancient Chinese garden.  Their attraction?  An animatronic dragon.

Five months ago, when this concept was first taking shape, the idea of it was overwhelming to me.  I'd never been involved in DI, so to see everything happen from the ground up (since I was recruited to be a team manager...ha ha) was interesting to say the least.  These kids have a lot of great ideas, a lot of energy and a lot of opinions.  To see seven different personalities come together and work on a huge project like this is impressive.  

EVERYTHING has to be done by the team.  Adults can supervise (such as when they are using a soldering iron, staple gun or table saw!) and keep them on track, but nobody except the team members can contribute to the creation of every aspect of their solution to the challenge.

The Metallic Chickens painted an AMAZING backdrop for the Chinese garden.  They built their animatronic dragon named ODIS ("Our Dragon Is Supreme"), which utilizes hydraulics and oscillation for movement.  They built a pedestal and bushes, designed all their own costumes and wrote a complete script explaining the presence of ODIS in the garden and how he affects the unlikely location.

In February they competed against 13 other middle school and junior high teams at the regional tournament.  Only the first place team advanced to the state competition.  

Metallic Chickens won first place!

Wow.  Ok.  My fellow team managers and the team parents knew these kids were smart.  We saw how hard they worked, how many hours they put in, the fantastic ideas they came up with.  Did I have any idea they would compete so well, well enough to win first place in the region?  No way.

ODIS lives to see another day.  (He's a bit of a diva.... high maintenance and fragile even though he's cute).   Our team had five more weeks of rehearsals and work days to get ready for State.  Our script was tweaked to perfection and the props were spruced up a bit. 

This past Saturday was the State Competition in Mansfield.  We left on the bus at 6:45am.  It was 86 degrees the day before.  On the way to Mansfield the temperature was 29.  There were SNOW FLURRIES floating around when we arrived.  It was just the start of what would be a surreal day.

I don't have any idea how many total teams participated at State.  It was held at three different contest locations (high schools), but it seemed like everyone was crammed into one building.  Teams were lined up throughout the school, down hallways, in the cafeteria.... eating lunch on the run, dressing and putting makeup on in the middle of the chaos.  Our team had IC first, shortly after we arrived.  They aren't allowed to talk about the specifics until after Globals so as not to give anything away, so nobody besides the team members, the judges and the one team manager allowed in the room know what their IC was.  

When the Metallic Chickens came back to our "home base" in the cafeteria I asked how they did.... thumbs up or thumbs down?  They looked at me and kind of waved their hand back and forth.  The team manager that went with them said they did well, but they didn't KNOW they did well because they didn't really understand the challenge.  They worked through it, though, and she said they did it, even though they didn't know it.  ha ha   IC has definitely been a challenge for our team, so for her to be smiling about how she thought they did left us feeling good.

After lunch it was on to the Team Challenge.  Makeup was finished up, costumes were donned and props were unpacked.  We checked in with an appraiser and the team enthusiastically described their unlikely location and props.

They competed at 1:40pm in a classroom with half a dozen appraisers (judges) around the room ready to watch.  Our team had a room full of family and friends there for support.  Even Mr. Light, the school district superintendent, came to support the Wylie teams!

The performance went well.  There was a stumble over a line or two, and a malfunction with the crown (for once ODIS wasn't the problem), but other than that, good job Metallic Chickens!  

As a team manager and parent, I was apprehensive.  I knew they were good.... they made it to State!  But Saturday's performance was not the best they've done.  Things didn't all go smoothly.  But they did it and did it well.  About an hour after they competed we were able to get their raw scores.  These tell you how the appraisers scored them based on the different elements of their challenge.... but that's about it.  You don't really know how you did until you know how they scored everyone else!  

Our scores were really good.  Only slightly lower than our regional score, and everyone said that was to be expected.  After all, at State you are going against all #1 teams!  We were happy with the score, and even happier with the appraisers' comments:

We had several hours to pack up the props, change clothes and eat dinner before the awards ceremony that evening.  The Chickens blew off some steam and refueled at a restaurant near the field house. 

If you ever look up "mass chaos" in the dictionary, you would probably find a picture of a DI awards ceremony.  
Holy cow.  People everywhere.  Hyper kids, exhausted team managers, loud music, beach balls flying, glow sticks all around!  It's loads of fun but also seems endless.... just give us the results!!!!!

It seemed to take forever because there are a handful of different challenge categories, and for each one there are several different age levels (elementary, middle and secondary.... some even had university level).  So having to listen to them announce the top six or eight (depending on the challenge) teams in every age group of every challenge.....  even though they went quickly, we were getting very impatient.  And very nervous!  

The top six teams advance to Globals in Knoxville, Tennessee.... but in our challenge we were up against 19 other teams.  And we had no idea how they did!  We were not able to watch anyone else's.
When they finally started announcing for Unlikely Location my stomach was in knots.  The kids were on the edge of their seats, hands clasped in prayer, watching the screen avidly.  I did not want their hearts broken.

Sixth place....not us.
Fifth place....not us.
Fourth place....not us.
Third place....not us.

Oh God.

Surely we weren't top two?



To say I was stunned is an understatement.  To say I was proud is an even bigger understatement.  I went from ready to cry for their disappointment to shocked and elated in the span of ten seconds.....

So yes.... ODIS lives to see ANOTHER competition.  There are some more repairs to be made, and the next five weeks will be filled with rehearsals and work days..... just like the last six months.  (I just thought softball season never ended!)  We will leave for Knoxville on May 21 and the competition starts May 23.  There are a lot of details to take care of between now and then and right now we're on information overload, but still.... I couldn't be more thrilled for my girl and her teammates.

Monday morning on the way to school, she sent me this text from the bus:

That says it all, doesn't it?

If you've read this entire post, thank you.  The Metallic Chickens have traveled a long road, and they aren't at the end yet!  Please say prayers for safe travels to Tennessee and for them to do their best at Globals.

For those of you who haven't been able to see them, here is their State performance that earned them a trip to Globals: