On February 17th I had my fourth brain surgery, a shunt revision.  And while the surgery went as planned, the recovery has not.

When my husband was allowed to come in and see me post-op what I was saying didn’t make sense.  He told my nurse, who spoke to my surgeon, who made the call to move me to ICU.  I was there for 8 days.

I have no memory of those days.

I had blood on the brain and my brain was swollen.  I have short-term and long-term memory loss as a result of my surgery.

This has been the hardest valley I’ve ever walked through.

Memory loss is so strange.  I have to write down what I do each day just so I can remember it tomorrow.  Bits and pieces stick, but that’s it.  I can vaguely remember yesterday.

My long-term is about up to November, but after that it’s either really cloudy or non-existent.

My memories almost feel like dreams.  I have to think really hard to sort out if it was a dream or a real memory.

At first I wasn’t allowed to be alone but now I can for short periods of time.  That was hard, especially for someone who normally spends a lot of time alone.  That honestly might have been the hardest part of this.  I feel like I recharge my social battery in solitude.

This surgery and recovery have held a lot of sadness and heartache.  At first I forgot loved ones that have passed on to Heaven were gone.  My poor husband had to tell me, and I grieved them all over again.  I can’t even begin to imagine how hard that was for him!

For some reason, probably brain stuff, the weeks following my surgery held a LOT of tears.  And I mean an obnoxious amount even for a self-proclaimed crier like me.  Praise Jesus that part has subsided some!  To be honest I was tired of crying all the time.  Crying made my head hurt, but those tears refused to be stifled.

But, then God.

One thing I’ve noticed during this recovery is that my brain is constantly telling me to praise God.  Awake or asleep, I’m praising Him.  After all, He’s the reason I’m still here.

I want to share this song I’ve been listening to lately that really resonates with my heart.  It’s This Valley Is For Me by The McKameys.

as i look down this mountain side
i can see where this road goes
the shepherd is leading me
to a place where i can grow
tho’ it seems to be a trying test
i have no doubt he knows what’s best
it just might be a place of perfect rest
this valley is for me

this valley is for me
the waters have been made so sweet
a pleasant rest for my weary feet
this valley is for me
a far cry from the mountain scene
the grass here has been made so green
my shepherd chose this route
so i can say without a doubt
this valley is for me

This has been, without a doubt, my most difficult recovery.  At times, I’ve been worried this may be the rest of my life.  What if my memories don’t return?  I’ve felt fear and anxiety and, at times, anger.

In those moments I remind myself just how powerful the God I serve is!  He is faithful!  The Bible tells us that Jesus Christ is the same yesterday and today and forever. (Heb. 13:8)  He loved and cared for me (and you) in the past and He will continue to love and care for us!

I do covet your prayers, for my memory and healing.

But I know, without a doubt, I will walk whatever path God has for my future.  And I will walk it while praising His name!

 

I have taken quite a long hiatus from writing here.  It wasn’t intentional, at least not on my end.  In January of 2021 I heard God telling me to be still and be quiet.  When I first heard that, my first response was I heard Him wrong.  I mean, doesn’t He realize who I am?  I’ve never been quiet a day in my entire life.

I wish I could say I listened to Him straight away.  But this girl has never been one to catch on quickly.

Eventually, I gave in and headed His prompts.  I was still and quiet.  I knew if He was telling me this, there was a good reason for it.

A month later my Dad got sick.  The next month I had my third brain surgery.  I got meningitis.  My sweet, sweet Dad passed away.  And I had another abdominal surgery.

God was preparing my heart for the hardest season of my life.  I needed those quiet, still moments.  I craved them.  And in those moments, I found myself continually throwing myself at my Father’s feet.

I felt today, finally, God telling me it’s time.  It’s time to get back on here and share.

I have anticipated this day for months.  I worried about how I would make my entrance back.  I worried if I would still be able to write.  I stressed about what words I would say.  I was so anxious about this post.  But, now that I’m here, the words are flowing.  That’s all Him y’all, not me.

While I was writing this a song came on that made me sit up and listen.  Again, a God moment without a doubt.

There’ve been times I felt so all alone
But in my lonely hours
Yes those precious lonely hours
Jesus let me know I was his own
Through it all
Oh I’ve learned to trust in Jesus
I’ve learned to trust in God

I have always felt as if my biggest testimony comes in my medical journey.  I think that is where He wants me to begin.

In the fall of 2011 I went in for a routine laparoscopic hysterectomy.  One of the first cuts the doctor made hit a main artery.  A 9 inch incision, 2 units of blood, 1 unit of plasma and 1 unit of platelets later I woke in ICU.  I had nearly died during the surgery.  And during the surgery the doctor also missed a huge cyst on my left ovary.  Four months later I went in to have that removed.

During that surgery, the same doctor put a clip on my ureter and put a hole in it.  Three days later I had emergency surgery for a kidney that hadn’t drained in days.  They installed a stent, hoping that would help the ureter heal.

Over the next 7 months, I had 8 surgeries to replace the stent.  Each one would get corroded and calcified and cause a kidney infection, which would knock me down.  Finally the doctors at the Cleveland Clinic determined I needed a ureter reconstruction.

In October of 2012 I had a 14 hour surgery to repair my damaged ureter.  While they were operating, they also found I had a partial bowel obstruction from adhesions and that was fixed as well.

The surgery was a success!  But sadly, my kidney had too much damage done to it.  It was no longer functioning at all and was causing more harm than good.  In February of 2013 I had my kidney removed.  It was a routine surgery but unfortunately I had a small stroke during it, awaking to a completely numb face on the left side.

Because of all the prior abdominal surgeries, adhesions were growing rampant in my abdomen.  And we found out I have Adhesion Related Disorder.  I’ve had five robotic lysis of adhesions, and it’s a surgery I will need for the remainder of my life every year or so.  I’m having another one next month.

I found out in March of 2018 that I was born with Ehlers-Danlos Syndrome, a diagnosis that explains so much of my medical journey thus far.  The EDS has caused Intracranial Hypertension (my body produces too much cerebrospinal fluid (CSF) and the pressure within my skull is too high).  The Intracranial Hypertension had also caused stenosis of a vein in my brain, a partially empty sella, hearing loss, the loss of eye sight, memory issues and horrible daily headaches.  And the stenosis of my right transverse sinus also increased my stroke risk (and explains the stroke I had during the 2013 surgery).

In June of 2018 I had a stent placed in my right transverse sinus, hopeful that it would reduce the pressure inside my skull but knowing it was up to my brain to see it as a solution.  It didn’t.  And in October of 2018 I had a Ventriculoperitoneal (VP) Shunt placed in my brain.

But because of having EDS, my body doesn’t heal quite right.  And the incision in my abdomen from my shunt surgery didn’t heal correctly, and it created an incisional hernia.  Not only that, but the hernia also pulled my shunt tubing up out of the right side of my abdomen and had it laying on my liver.  I had surgery to correct the incisional hernia and a shunt revision.

In the winter of 2021 I realized many of my high pressure symptoms had returned.  Through some testing and a visit with my neurologist it was determined I needed a new VP Shunt placed.

A week or so later, my Dad got sick and entered the hospital.

I had surgery in March of 2021 to replace my VP Shunt.  The surgery went well, praise Jesus!  But a week later I began to feel extremely sick.  It seemed to get worse each day.  It took me weeks to convince an ER doctor to do a bedside spinal tap.  As I was afraid of, I had meningitis.  I was transferred back to the hospital where my shunt surgery had been.  I had three days of some heavy IV antibiotics and was released.  Before being released, a CT scan was done.  And they saw all of my abdominal shunt tubing was out of my abdominal cavity and sitting below my skin.  Surgery to fix that was scheduled for a month later.

This was the same time my Dad entered a nursing home.  At least now we would be able to go visit with him.  Because of the hospitals Covid protocol, only my Mom could visit him there.  My kids, my husband and I got to spend some precious time with him.  Time we will always treasure!

My Dad was placed on hospice care the Friday before my scheduled abdominal surgery.  He went home with Jesus two days later.  I somehow was able to call on a Sunday, get the right person at the hospital, cancel my surgery for the following day, and get it rescheduled for the following week.  Another God moment!

To say those months were hard, and scary, and taxing is putting it mildly.

But, God.

And as I’ve said numerous times, God has me on this journey for a reason that is precious and perfect. And while I may not know His reason, I will praise Him in the midst.

Throughout this entire journey I’ve been reminded time and time again of God’s extravagant love for me.  In the darkest places, I found Him there with me.  Speaking to my heart.  Speaking life into the hurt places.  I’ve learned what it’s like to seek and find Him. I’ve thrown myself at His feet in a teary heap, time after time.  Sometimes moment by moment.  I’ve learned that even in the hard times, He gives us enormous blessings.  I’ve learned joy doesn’t come and go with our circumstances.  But joy can be experienced despite our circumstances.  Joy is a fruit of the Spirit, second only to love, it flows from God, not circumstances.  We have a fundamental need for joy in our lives.  Life without joy is overwhelming, depressing and just plain sad.

God loves all of us extravagantly.  And He’s not finished with a single one of us.  The fact is, He has a sovereign plan that is for good and not evil.  For joy and not sorrow.  He is writing a story of on-going redemption with each of our lives.  Our lives are woven together through seasons.  It’s one person’s season to experience this.  And another person’s season to experience that.  Neither is loved more.  Neither is more dispensable.

Ecclesiastes 3:11 sums up what I’ve felt in my heart in a few simple, powerful words: He hath made every thing beautiful in his time.

His time. His time. His time. HIS TIME.

Joy comes in knowing Jesus, experiencing His presence and trusting His timing.  Joy comes when we fall more in love with the One who loves us most.  To experience joy is to experience Jesus.

So many times we want joy, but not trails.  We want faith, but not testing.

Y’all, I’m going to be honest, I’ve thought many times how much easier my life would be without pain, without surgeries, without loneliness, without heartbreak and without financial hardships.  As crazy as it sounds, I wouldn’t change a thing.

God often uses the hard to refine us.  To transform us into the person we were created to be in the first place.  More like Him.

If you are going through a hard season of trials, I encourage you to find joy in the midst of the hard.  While it isn’t always easy, it is always worth it!

This is a day that I dread and one that makes me cringe every single year.  A day where I try my very best to stay away from all social media.  As many of you know, October is Breast Cancer Awareness Month.  And October 13 has been deemed national No Bra Day or Free the TaTas.

I am the daughter of a woman who not only fought breast cancer but won that fight. Not only one fight, but multiple fights. Her fight spanned across many years, each one being tough in it’s own way.  From 1981 through 1989 she battled and fought.  And throughout it all, she only asked God for one thing…to allow her to live long enough to raise her daughter.

From her perspective, those years had to be frightening.  The first surgery she had in 1981, she nearly lost her life.  The cancer was more advanced than they first anticipated, and a partial mastectomy had to be performed.  The next battle resulted in a complete mastectomy.  And the last battle included chemo and radiation.

When she first found out she had cancer, I was only six years old.  I can remember playing with the neighbor kids and waving to her as my Grandpa took her to the hospital for her first surgery.  I can remember hearing whispers of her condition when I was around.  I can remember crying, because I just wanted my Mama home.  I can remember the look on her face the first time she showed me her changed body riddled with staples.  I can remember the nights she spent sick from chemo and radiation.  The days her stomach would only allow her to eat rice.  And the morning I found her passed out on the floor because her white blood cell count had dropped.

The intent of this post isn’t to gain sympathy, but rather to give you a glimpse of what the reality of breast cancer is.

Her and I have had many, many discussions about ‪No ‬Bra Day and Free the Tatas. And to a breast cancer survivor, to a woman who fought to live so she could raise her daughter, to a woman that spent many days sick from radiation and chemo, these campaigns are completely offensive.

This is a great post from a survivor and I think sums up most of their thoughts on this:

The thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite

And as my Mama said:

It’s as much as them saying “Look, I have them and you don’t.”

I don’t understand how a day where women are encouraged to share photos of their braless breasts is to be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission.

Answer this question: What does taking that bra off do? Does it bring research, awareness or education?

National No Bra Day was started in July of 2011 by Anastasia M. Doughnuts.  It was started through a Facebook event page and had 400,000 supporters.  It was so successful that it was repeated the following July.  Then someone had the bright idea to have a second No Bra Day annually on October 13th to piggyback on Breast Cancer Awareness Month.  The event page on Facebook for No Bra Day is quite clear in that the occasion is meant to celebrate breasts.  It doesn’t even mention breast cancer until the very last paragraph by stating “Breast Cancer is something you should take seriously and be checked for”.

This day, which many buy into, is nothing more than sexualizing breast cancer.  It’s sexualized by the slang used such as “Save 2nd base”, “Feel your boobies” and “Save the ta-tas”.  It’s sexualized by the provocative imagery used to raise funds and visibility.  It’s sexualized in the names of organizations created to promote breast cancer awareness, such as Coppafeel and Boobstagram.  It’s sexualized by social media users who use the campaign as a guise to post pictures of themselves topless with no intention of promoting breast cancer awareness or donating to research charities.  We’ve sexualized breast cancer so much that a popular porn site has even decided to cash in on it, donating a penny to charity for every 30 “boob-themed videos” watched.

And that, my friends, is disgustingly sad.

Breast cancer isn’t sexy, it’s devastating.

It’s not only devastating but often times is also disfiguring.  Many women suffer with body image issues after breast cancer.  Ann Marie Giannino-Otis, who runs the blog Stupid Dumb Breast Cancer, said

“My breasts don’t even look anything like what they used to. They’re completely different. We look in the mirror after breast cancer: Our nipples are gone; we have scars that go across our chests; we have either gained a lot of weight or lost weight. We’ve changed completely. We’re not accepting of this body, and now you’re telling us to take off a bra?” she said. “What breast cancer is is taking off our breasts, having a lumpectomy, making them completely unerotic. So you’re sexualizing something that’s not sexy. It’s disgusting.“

Cancer patients don’t have time for cuteness when it comes to the potentially fatal disease they’re faced with.  They do, on the other hand, have an appreciation for realism and action.  Ask a real survivor what you can do to promote breast cancer awareness or how you can honor her fight.  Their answers would include get a mammogram, run a race, donate to the Susan G. Komen Foundation or simply be there for someone fighting a battle.  Taking your bra off isn’t the answer.

National No Bra Day is all about the breasts, not the women attached to them.