Kicking cancer's ass - day 2058

Today is National Wear Your Pajamas to Work Day.  (It's true - look it up.)
I just might need to, considering it's an insomniac blogging kind of night.  Almost 2am.... my morning alarm is going to suck.

The weird thing about insomnia is that it hits me when I'm SO tired.  I just want to close my eyes and sleep.... but I can't.

So... here we go:

First and foremost on my mind...before you complain, have you volunteered yet?

I received a very thorough dressing down via email today.  I don't get mad very often, but after reading that email I.WAS.MAD.  If I take a step back and ignore the personal attack, it's actually quite funny.  People get bent out of shape over the dumbest things.   They are so self-centered and quick to criticize, and yet when you ask for help, suddenly they aren't so vocal.  I bust my ass at my volunteer position.  The amount of emails/texts/phone calls I get is astronomical.  I can't even begin to count how many hours I spend, on my own time, often away from my family.  And yet, for some, it's not enough.  The worst part?  This person who thought to give me a lesson in how to do my volunteer job?  A little more than half my age.  GOOD GRIEF.

I know there are a lot of people who appreciate what I do.  I know I'm making a difference, and that's the important part.  But sometimes all it takes is one instance like today to totally defeat me.  I actually said "I quit".  Of course I didn't mean it, but in that moment, I kinda did.

I wanted to say... you think you can do a better job?  Have at it.
I wanted to say... you think getting this worked up over a minor issue on your THREE YEAR OLD'S tee ball team is worth it?
I wanted to say... my kid doesn't even play in this league and I'm doing a thousand times more than you are to make sure YOUR kid can play!
I wanted to say... I AM A VOLUNTEER!

In the end, I did say some of those things, and a lot more (a LOT).  But you know what?  If some young punk has the right to criticize me, then I have the right to set him straight on his misconceptions.

Volunteering is a thankless job.  I don't do it for thanks, but I sure as hell don't do it for insults either.

Today the Notre Dame Cathedral in Paris burned.  It made me so sad.  I'm not Catholic.  I've never been to France.  But seeing the pictures of such an iconic, historic, incredibly beautiful building on fire made my heart hurt.

Dexter is a funny, funny dog.  He snores.  A lot.  Sometimes with his eyes open.  Sometimes he wakes himself up.  (Sound familiar Grammie??)  We got him a new collar.  It's Dallas Cowboys blue with silver stars.  He's a true Texan now.

Today was a first for me.  I went to a florist with my son to order a corsage.  He is going to PROM.  Holy cow.  His date isn't a "date" date.... she's the only sophmore in their group of friends and if you're not a junior or a senior then you need to be the date of one.  So J is taking a date to prom.  Eight words I never thought I'd say.  Ha!  

My daughter and her friends started playing Dungeons and Dragons.  The crazy, sad part is that my brother used to play that when we were kids, and I actually had a moment the other day where I thought, "I need to call Darren and tell him about K playing D&D."  Sigh.  The loss of my big brother is still gut-wrenching.

I hate lymphedema.  With a passion.  Compression garments suck.  The constant ache sucks.  The puffy hand and lumpy arm and nonexistent elbow all suck.  Dr C said it can take up to a year to see full results from the surgery I had.  Judging by the lack of improvement I've had, I'm not very hopeful that my case will be a success.  I want to live a long, long time.  But knowing I'll have to live a long, long time with this disease that nobody knows about or understands or can do anything about is depressing.

Speaking of surgery.... one of my mom's coworkers has to have surgery.  She went to NYC to meet with the doctor, and guess what?  HER doctor was one of MY favorite doctors in Dallas!  Dr K was my gynecological oncologist until she moved to New York a couple of years ago.  What a small world we live in.

Even though it'll be a short night, I suppose it's time to sleep away my troubles.  

Tomorrow... well, today...is a new day.

Kicking cancer's ass - day 2049

  

It has been a little over a month since my big brother died. 
38 days to be exact. 
We still don't know why.  The pain and sorrow are just as heavy now as they were the night I found out.  I relive that phone call over and over.  I still can't believe that he's gone.

I think about him so often, and this is how I picture him when I do:  a baseball cap (probably Dallas Cowboys) on his head, a water bottle in his hand, and a smile on his face.

I hate that he passed away.  HATE IT.  Not too many things make me very angry, but this does.  

I don't want to sound trite, because the fact that Darren is not in our world anymore truly sucks..... but there is always a silver lining.  

One of the bright spots in one of the darkest months of my life is Dexter.  With Darren gone, his little buddy needed a home.  We didn't know it, but we needed Dexter, too.

Three weeks ago today Hubby and I left Las Vegas with this precious cargo.

It was a long, long drive there and back in a few short days, but oh so worth it.

This little (ok, maybe not so little) dog has brought joy and laughter to our house.  I have always been a cat lover, and never wanted a dog.  Who knew Dexter would make my heart so happy?  He has Darren's personality, and being able to love Dexter since Darren can't is a balm to my wounded soul.

My kids are over the moon with this dog, especially K.  

She is an animal lover and has been begging for a cat or a dog for YEARS.  I was the one who would veto a dog, Hubby always vetoed a cat.  There was no way on earth I could have denied her, though, when she asked if we could take Dexter.

He is a quirky guy who hates dog food, likes popcorn, enthusiastically greets everyone he meets and LOVES riding in the car.  And he's always smiling.

The last six weeks have been a whirlwind of travel.  Last weekend we were in Kerrville for softball.  The weekend before that we were in Corpus Christi for a school competition.  The weekend before that we were in Vegas to get Dexter.  The weekend before that we were in New York for my brother's memorial service (and then Dallas for softball).  The weekend before that we were in Weatherford for softball.  The weekend before that we were in Justin, TX for a school competition.  It has been exhausting:  I'm more physically and emotionally drained than I have been since the dark days following my cancer diagnosis.  Taking Dexter into our family somehow makes it all just a little bit ok.

Kicking cancer's ass - day 2014

He heals the brokenhearted and binds up their wounds
Psalm 147:3

Such a lovely verse, but God I'm so damn sick of it.

On Friday, March 1, 2019, my big brother unexpectedly passed away.  No warning, no explanation.  One minute he was there, getting ready for work, and the next he was unresponsive on his bed.
It gets worse.  Not even a week before, his wife unexpectedly passed away.  No warning, no explanation.
We have no idea what happened.

I can't believe any of it.  How do you make sense of it?  He wasn't sick.  He was healthy.  He worked out.  He was only 47 years old.  His only medical issue was high blood pressure, and he was on medicine for that.  What. The. Hell???????

I haven't played golf since I was diagnosed with cancer, but when I used to play, he was one of my favorite partners.  I remember one visit he made to Abilene and we went out to play a round of golf.  It was FREEZING and we used a cart.  We complained and commiserated about the stupid wind and how cold it was, but then we had a hilarious shared moment when we had to let another golfer play through:  it was a little old lady walking using a push cart for her clubs.  There we were, half her age, and on a cart, and WE were holding up HER game.  We laughed and laughed.  

Darren knew how to make anything fun.

My brother was a popular guy.  He had a lot of friends (a LOT), and they all loved him.  He was the life of the party and never met a stranger.  As much of an introvert as I am, he was the exact opposite.  I work in an office with two other people, one of whom I'm married to.  My brother was the ultimate salesman and was always striving to close the next deal.  He wined and dined clients, traveled and attended conventions, and he truly believed in the companies he worked for.  He never had kids and didn't even get married until well into his forties.  I thrive in my roles as wife and mom.  But as much as we were different, we had a sibling bond that I'm going to miss for the rest of my life.

My kids thought he was a rock star.  "Uncle Darren" had the best house (in VEGAS!), the best video games, the best dog, and he adored his niece and nephew.  I don't know how many times J & K have asked over the years "When are we going to see Uncle Darren again?"  <Sigh>  I wish now we had gone to visit more.   Hindsight.  

I have been a Dallas Cowboys fan all my life, and I'd say it's hard to find someone who loves them more than I do.  But Darren did.  He was a Dallas guy through and through.  I don't think I ever saw him come through an airport on a visit without wearing a Dallas Cowboys shirt.  Even though we lived far apart, we were able to hook up at a couple of Cowboys games in Dallas.  This is one of my favorite pictures of us:

He loved sports (golf, hockey, baseball, and especially football), and Dallas was his team.  We have a whole crew of friends we grew up with in New York who are all die-hard Cowboys fans.  It's hard to imagine that group without him.  How can we have fantasy football without Doomsday D?  

Over the last few days I have gotten so many beautiful messages from family and friends - both mine and his.  They all loved him, they are so sorry for my loss, and he was such an amazing guy who will be missed.  All true.

We were born 17 months apart, so growing up we had our share of squabbles.  He was the mean older brother and I was the bratty little sister.  As we grew older, though, we learned to appreciate our differences and we truly became friends.  He was still the older brother and I was still the little sister.... but we outgrew the squabbles and honesty LIKED each other.  

He was so supportive of me after my d-day.  There were many phone calls and texts from him saying how proud he was of me.  This was one of his facebook posts when I was going through treatment:

I can honestly say that I am truly amazed every day at the bravery, courage, strength and grace you have shown during your dominating victory in your fight thus far. I know you'll have battles still left to fight - but that awful affliction never stood a chance against your strength. You've actually grown and become an even more amazing person than you were prior to getting the diagnosis - if that was possible! You've left your big brother completely astounded and proud beyond words with the way you've handled the past 12 months. I love ya little sis - you've shown everyone close to you or even remotely associated to you what it means to be courageous and graceful in the face of adversity. You have so many wonderful years ahead of you in life, and now you'll just treasure them that much more. I miss you guys - wish I was back in NY right now visiting mom and dad with you and the kids!! I may still hop on a plane Friday - we'll see... :) Either way enjoy the rest of your trip!! Love, D

The grief I'm feeling right now is gut-wrenching.

I am now an only child.  

I will never again get a text from him commiserating about a Cowboys game.  I will never again get a Snoopy birthday card from him.  I will never again get flowers on Mother's day from him simply because he was proud of the mother I am to J & K.  I will never again hear "Hey rule" when I pick up the phone.  I will never again have the chance to complain that he always calls me on his way to work and then loses me at the same spot where there's no reception.  I will never again get to share our love of good New York pizza, or Krause's chocolate.  I will never again get funny videos of his dog Dexter.  I will never have my big brother to lean on if something happens to one of our parents.

We were as different as two people could be, both in looks and personality.  But we were the same, too.  I said on Facebook:  

Darren, you were my first playmate, my tormentor, my chauffer, my friend, and most of all...my big brother. Those are huge holes that will never be filled. 

The blessings in my life shine a little dimmer knowing you are no longer in it. 

I can't understand. I don't want to accept. 

I just miss you.

Please pray for me.  Pray for my mom.  Pray for my dad.  Pray for everyone who loved Darren.  I wish everyone could have a big brother like him, and I wish with all my might that the last three days are a nightmare I could wake up from.

I love you D.  Go Cowboys.

Kicking cancer's ass - day 1985

 

Today is my 46th birthday.  At first I told Hubby that I wasn't going to have a birthday because I wanted to stay 45.  Going past that, in my mind, seems like the start of the downhill slope.  But then I realized....I was diagnosed with breast cancer at age 40, so the farther I get away from that number the better!!!

Unlike last year, my day did not start out with my BFF singing to me, but it was still a pretty damn good day.  My mom called and sang Happy Birthday.  My dad called and sang Happy Birthday.  My brother texted a long Happy Birthday message.  My kids gave me cards and perfect gifts (Pure Water gift card and a gift certificate for a pedicure).  I've had dozens of birthday wishes on Facebook, through texts and phone calls.  And I spent the day with my most favorite person.

With the kids otherwise occupied, Hubby and I took a ride out of town to our friends' lake lot.  Lunch at DQ meant birthday ice cream. (only one of those was mine!!)

A cat nap on the ride home continued for two more hours once I got comfy on the couch.  

Dinner with my Hubby, my kids and our friends meant steak and a frozen peach bellini.  Yum.

We sent the kids home and the adults actually went out....to a bar....with drinks and live music and everything!  I saw some of my softball people there and got some more birthday hugs.

I didn't have a birthday cake (I would've been too full for it anyway!), but if I had, I'd want it to look like this one:

Celebrating another birthday is another big eff you to cancer.  I'm still here.  I'm still healthy.  I'm happy and content and my life is full of blessings.  Happy 6th bonus birthday to me!

Kicking cancer's ass - day 1984

One year ago, I sat in a pretty room in a pretty hospice house in a pretty Virginia town...it was a quiet, peaceful winter's night.  But all of that pretty can't hide the reality of what that house is:  a place where people go to die.

The girl who had been my best friend since I was eleven years old was lying in the bed in that room, ready and waiting for God to call her home.

I was leaving the next morning, heading back to Texas...back to my family, back to a job and kids and school and all of the things that fulfill my life as a busy mom.  But my heart just wanted to stay right where I was at that moment.

I think I sat by her bedside most of the night, unwilling to give up any of our last precious hours together, not even to sleep.  I held her hand, I fed her ice chips, I played music for us on my phone.  All the while I was trying to figure out how the hell I was going to say goodbye the next day.

Goodbye is one thing.  But this was GOODBYE.

I know she was ready.  She was tired, and her soul was at peace.

I'm still not ready.

It's been almost one year since I last saw Trudy's smiling face.  One year since she sang Happy Birthday to me for the last time.  One year since I heard "I love you Bah".

Time moves on.  Life goes on.  Grief lives on.

In ten minutes it will be my sixth "bonus birthday" since my very own d-day, which is amazing and fills me with gratitude.

It will also be my first birthday without my Trude, and that is amazingly sad.

Kicking cancer's ass - day 1970

Last Tuesday I had surgery.  My eighth cancer-related surgery, and the third one that lasted longer than eight hours.  That's a lot of anesthesia, folks.

This latest surgery is called lymphovenous bypass, which is microsurgery done by a plastic surgeon.  The procedure connects lymph vessels in my arm to tiny veins (the size of a human hair!), so the lymph fluid has somewhere to go.  It's not a cure....there is no cure for lymphedema.  But the hope is that it helps reduce my swelling and making it easier to maintain.  Results vary and it could take up to a year to know for sure how much it will help me.

Click here if you want to see a photo of my wrist.  I have 4 small incisions.

Ten days post-surgery, I have a love/hate relationship with the whole thing.

I love that I have had very little pain in my arm, even the day after surgery.
I hate that being under anesthesia gives me headaches, and being under for that long has given me a LOT of headaches.

I love that I am able to stay comfortable on our reclining couch day and night.
I hate that I have to sleep on the couch.  I just want to stretch out in bed with Hubby.

I love that my mom was here to help after my surgery.  She was SUCH a big help...a blessing.
I hate that except for one dinner out, we spent her week here with me sitting on my ass.

I love that my only post-op instructions (other than the usual no strenuous activity or lifting over 5 lbs) are to keep my arm wrapped and elevated.
I hate that keeping my arm wrapped and elevated is irritating the skin in the crease of my elbow and giving me a constant crick in my neck.

Click here for the photo of where my arm hurts.  Ouch.

I love that I have the best friends around me, offering rides for K, bringing meals for my family and putting together the most amazing basket of goodies for me (the chocolate is already gone...LOL).
I hate that I am such a burden to everyone yet again.  My son is being sent on errand after errand (and does them all cheerfully).  My Hubby has had to pick up all of the "mom" slack including laundry, dishes, even washing my hair.  I know my friends are happy to help out, but I hate that I can't even cook a meal.

I love that I am able to take a shower, dry my hair, brush my teeth and finally get dressed by myself (sweatpants are my friend).
I hate that I have to do everything one-handed and it takes me three times as long (I'm typing this with one hand and it's SLOW going!)

I love that the foam support for my arm is not uncomfortable.
I hate that I have to use my blue foam friend for four weeks.  Non-stop.

I love that this surgery is even an option, and that I was a good candidate for it.
But I really hate that I had a reason to have it.  Cancer really is the gift that keeps on giving.

Kicking cancer's ass - day 1954

Five years ago tonight I was going to bed whole for the very last time.  After four months of chemotherapy treatments, on January 3, 2014 I had a bilateral mastectomy:  a very long, difficult surgery.  For someone who had only ever had minor procedures done before, and not even very many of those, a ten hour surgery to remove parts of my body I was very attached to (pun intended!) was incredibly scary.  

People try to make light of breast cancer surgery.... "Of course these are fake - my real ones tried to kill me!"  Yes that's true.  But cutting the cancer cells that chemo didn't kill out of my body is the only positive thing that happened that day.  It HURT.  Just raising my arm to brush my teeth was almost impossible.  It was a long, painful recovery.  I had to wear button down shirts for months.  I lost parts of my body that epitomize femininity.  I cried when I saw myself in the mirror.  I have little to no sensation in my chest.  Reconstruction made me LOOK more normal, and I'm very happy with the results, but I can't feel much of anything.  And I have scars.  Boy do I have scars.

Thankfully all of my scars can be hidden underneath clothes.  If you were to see me on the street you would never guess what my body has been through.  And while I hate my scars, I do think of them as  badges of honor, visual proof of what I was strong enough to endure.

Next week I am going into surgery again.  It will be another long (6-7 hours), complicated (working with veins the size of a human hair) surgery.  This procedure is designed to open up the lymphatic pathways in my arm.... and it's necessary because of that other surgery five years ago.  When they took all of the lymph nodes under my arm and in my chest,  the lymph fluid had nowhere to go.  The smallest strain or injury to my affected arm could cause incurable swelling (lymphedema).  Not everyone who has a mastectomy will get lymphedema, but anytime you mess with lymph nodes anywhere in the body, it's a risk.  My BFF had lymphedema in her leg from abdominal surgery!  Three years after that surgery my left arm started to swell.  

The micro surgery that I'll be having is a relatively new procedure, at least in the U.S.  Some people who have had it say it has changed their life, while others say it didn't help at all.  My surgeon said I can hope to see anywhere from 30% to 70% improvement in my arm.  Not a perfect outcome, and not guaranteed, but I'm willing to take the chance.  There is no cure for lymphedema, so it's something I will have to "manage" for the rest of my life.

I won't have too many scars (just three to four small incisions) from this surgery, and probably not a lot of pain.  The most difficult part will be having to keep my arm wrapped and elevated for a month.  So if you see me out and about in the next few weeks, please do not give me a high five!  I'm not waving at you.  ha ha

That is probably one of my favorite quotes.....not only because I love books, but because it's such a neat way to think of a new year.  

Since I'm going to be spending the beginning of this new year recovering from yet another surgery (this makes 8 if you're counting), I hope a year from now I can write how incredibly GOOD my book of 2019 turned out to be.

Kicking cancer's ass - day 1951

"I was born with a reading list I will never finish."

~Maud Casey

My cancer diagnosis changed so many things about me, including my ability to enjoy books.  For several years, with my time being consumed by being sick and exhausted from doctor appointments, treatment and surgeries, I just didn't have the energy to read a book.  Even after life returned into my new normal I had a hard time concentrating.  Chemo brain is real, folks.

This is the first year that I've been able to take the time to enjoy books again.  Right before Christmas I realized I had read 96 books, and I told Hubby I wanted to make it to 100.  Needless to say, for the past ten days I have been a reading machine.  Not only did I reach that goal, but I surpassed it!  I'm currently at 104 books with two days left in the year to still read.  😀

My reading stats on Goodreads clearly show when I was mired down in cancer world.  While I'm not even at fifty percent of the books I read at my busiest in 2009, I'm clearly on my way back to being a voracious reader.....a fact that makes me happy, but Hubby not so much!  ha ha

Kicking cancer's ass - day 1945

 

I'm a little baffled by the fact that I'm almost at two THOUSAND days of kicking cancer's ass.  That is the ultimate Christmas miracle and there isn't a single day that I take it for granted.

This is my sixth Christmas since I was diagnosed with cancer.  Five years ago I was recovering from 16 weeks of chemo.  Four years ago I was recovering from reconstruction surgery.  Three years ago I was recovering from yet another surgery.  Two years ago Hubby was recovering from neck surgery.  Last year was probably the most uneventful Christmas we'd had in a long time.... until this year.

Life is.... pretty much normal.  We are busy.  The kids have a ton of activities.  Hubby and I are busy at work.  We watch football.  I read books.  He watches murder mysteries.  We go out to eat and spend time with friends and complain about how tired we are.  It.Is.FANTASTIC.

This was the first time in years that we didn't go to church for Christmas Eve.  I miss it, but I am truly enjoying our family weekend. 

Yesterday I cooked a ham dinner for the Burleson family Christmas, with Hubby's dad, brother, sister-in-law and nephew.  Last night we brought K back out to hang out with her friend P, and we stayed and visited for a while.  Lots of stories, lots of laughs.

Today, as we always do, we celebrated a Norwegian Little Christmas by opening our stockings this morning.  We visited the cemetary to bring flowers to Hubby's mom (today is her birthday) and his brother.

Our friends invited our family to join theirs for Christmas Eve dinner at Bonzai (Japanese hibachi).  Then we went to look at Christmas lights downtown before coming home to open new Christmas pjs.

There is nothing glamorous about my life and I am perfectly happy with that.  I'm looking forward to a quiet, cozy Christmas Eve at home, and more of the same for Christmas day.

I'm so grateful to be here, alive and well, one thousand nine hundred and forty days after that awful day.  I hope everyone fighting the beast is able to take one day to celebrate life.... their life and the birth of Jesus.  Life isn't always easy, but it is worth it. 

Every day is a gift.  Merry Christmas to everyone I love.

Kicking cancer's ass - day 1903

"No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove his fur from your couch."
-Leo Dworken

What texture are you grateful for?

I'm grateful for the softness of a cat's fur. 

I have always been a cat person.  Maybe because I'm a little bit of an independent loner so I can relate to them.  ha ha  I also love a good back rub. 

I loved my cats.  Pumpkin and Shadow were the sweetest, most loyal cats ever (unless you ask my Hubby!).  I'll never forget the day Shadow died.  I knew she was going to the vet and not coming back, so I sat all morning with her on my lap and I just kept petting her.  That feeling of stroking her frail little body will forever be with me.

Kicking cancer's ass - day 1902

“Peace has victories, but it takes brave men and women to win them.”
– Ralph Waldo Emerson

What holiday are you grateful for?

I am grateful for today - Veterans Day.

I'm proud to live in the land of the free and the home of the brave.

I'm proud of my dad, an immigrant who served our country in Viet Nam and then became a United States citizen.

I'm proud of my stepson who served in the army, including a year in Korea.

I'm proud of my friend's husbands who have dedicated their lives to serving our country.

I'm proud to be an American.

Kicking cancer's ass - day 1901

"He stared at his hot chocolate like it held the secret to the universe."
— Lilith Saintcrow

What taste are you grateful for today?

Considering I spent 16 hours at the softball fields in frigid weather (it was 33 degrees when I got there this morning), I am incredibly grateful for the taste of hot chocolate.

Not only is it delicious, it warms you up from the inside like a hug.

Apparently a lot of people feel the same way.....we sold 500 cups of hot chocolate at the concession stand!