Big #23. Surgery #8

Surgery #8.

It's been 23 days since surgery, and this is the first day I've been able to find it in my heart to write this post.  Recovery has been a nightmare, and who wants to re-live nightmares?  I know I'll feel better once I get this out.  It's been 3 weeks of intense pain, tears, minimal sleep, fear, and a little sadness.  It hurts my heart to be back in this position- bedridden..in too much pain... not able to walk or go to PT or go to run or go to the grocery store.  It's like freaking starting over from the beginning, and it's deja vu, in a bad way.  I know that this recovery won't take a year, like my initial recovery... I know once the pain subsides, I'll be able to walk.  This too shall pass.  But for now, honestly....it's really freaking hard.  I'm trying to be strong and brave but I'm in too much pain to care about being strong and brave.  Little by little, I have moments where the pain isn't so bad I'm shaking or crying.  I'll have a decent day, and then I'll have a horrible day.  Thank God I have my God to get me through this.  We can do ALL things through Christ.

While this surgery was supposed to be the last, the real beginning to the real end.... something inside of me told me it wasn't going to go off easy.  For some reason, I was anxious for the entire month before the surgery.... scared that it wouldn't work, scared that I wouldn't wake up, scared of the pain.  I knew that this time, there wouldn't be a ventilator to keep me in a coma until the pain was tolerable.  I knew I'd wake up in the OR, feel that breathing tube pulled from my throat, feel the burn of the wounds as I was transferred from OR cart to the hospital bed and taken to recovery, throat on fire and wounds throbbing.

This was surgery #8, and the purpose was to close the "holes" in my leg and abdomen and fix the scarring so that I wouldn't be in so much pain, and it wouldn't look like I was attacked by a shark.  When I had the first 6 surgeries, so much tissue, skin, muscle, fascia was removed that they couldn't close the skin around gaping holes, so instead, they took skin from my other leg and essentially covered the holes with a skin graft.  All of the suturing/stapling was choppy and done only to get the wounds somewhat closed so I didn't get infections in such large wounds.  I'd show you pictures, but that might freak most of you out.  If you genuinely have an interest in seeing what the wounds looked like before this surgery, email me and I'll show you.  It's not necessarily something I want out there in cyberspace for all 40,000 of you to see, but I'm a nurse and I understand the interest, and don't mind sharing if you want to understand better.

In the weeks leading up to the surgery, my surgeon told me that yes, this was quite an extensive surgery, but I was in good shape (I've been running my butt off for the last 4 or 5 months) and he thought I'd bounce back relatively quickly.  As far as pain goes, there'd be pain, but I'd been through pain before and knew how to handle it.  What my surgeon unfortunately didn't take into consideration was the fact that these areas had already been operated on 7 previous times... I was in pain all the time even before this last surgery.  He, therefore, completely underestimated what my body was gonna go through during recovery.

On the other hand, my necrotizing fasciitis doctors knew it would be bad.  They warned me about the pain.  They were worried that trying to do all of the reconstruction at once would be too hard on me.  It was a double-edged sword, however, because they were also afraid to have me go under anesthesia multiple times.  We all decided as a team that we'd do the surgery all at once.  It would be rough, but I'm a damn fighter.  Pain has been my fuel over the last year to gain my walk and then run back.  When people wonder how I can run 7 minute miles yet still have pain and weakness and inability to be on my feet all day or climb stairs normally or squat down, I explain to them that running sure as heck isn't as natural.  It's a freaking fight every time.  But I want it so bad.  So bad.  It's my heart, people.  I cannot NOT run.  That's what it is.  It hurts every.damn.time.  I don't care.  I let the pain anger me, then fuel me.  I get mad and run faster.  So yeah... having one recovery that's rougher seemed to make more sense than having to go through two or three recoveries.  In hindsight, it might not have been the best choice.  Things did NOT go as planned.  I ended up having two surgeries anyways, and the recovery has been the worst I've gone through yet.  And here is what happened.

The surgery was supposed to go off at 10:30 that morning.  We were caught in bad rush hour traffic on the way there, and I started to completely lose it.  I'm sure there were a few four letter words that flew out of my mouth as well as angry tears and signs.  I was scared to death of the surgery, and being late was not helping things.

We got there, finally, and it ended up being no big deal, because my surgeon was running a little late.  They got me checked in, and before I knew it, I was getting wheeled up to pre-op.  Changed into the gown, IV started, anesthesia came to talk to me.... that was actually funny.  They assigned me the top anesthesiologist at Loyola after reading my chart and what had transpired last year with nec fasc.  They were worried I'd bleed out, or code, and so I had the top dog...who was also a great guy.  After seeing me and talking about my health history (all healthy except for the nec fasc stuff) he teased me that I wasn't sick enough for him.  Little did he realize at the time that I'd be plenty sick in about 12-24 hours.

My parents and I prayed together before they wheeled me off, and I couldn't help but let a few tears fall.  I was worried.  There were too many times, too many surgeries.  I could remember everything.  I feared that it might not work out this time.  My heart wouldn't take it.  They were doing so much work, SO DEEP in my leg and abdomen....it just made it too likely that I'd hemorrhage.  Plus my platelets are still crappy low from nec fasc, meaning if I did start bleeding, they'd have a hard time containing it.

It was at this time that I remembered the verse, "Do not be anxious about anything. But in every situation, by prayer and petition, present your requests to the Lord." -Phil. 4:6

I had to trust.  At that point, there was nothing more I could do.  Because my life is in God's hands.  As hard as it is to not worry and just trust that His will will be done, that is all we can really do in these situations.  Worrying will not change anything.  That has been the hardest lesson I've had to learn, and I still struggle with it on a daily basis.

The surgery lasted almost 6 hours.  They cut the skin graft out of my right leg, which took time, because it had attached itself to the muscle that was left.  Then, they brought the two sides of the hole together, and stitched it to a straight line scar.  They did the same thing in my abdomen's hole.  That was more difficult, because the hole was deep, and the graft was attached to several organs.  They also revised another large scar onto the other side of the abdomen.  In the end, I still have scars in all the places that were cut, but instead of gaping holes with skin grafts, I have straight line scars.  The hope is that I'll be in less pain eventually, and the areas will definitely look better...no more shark attack wounds.

When I woke up, I was in recovery.  My throat was killing me from the breathing tube, but at least I hadn't felt it come out this time.  As soon as I opened my eyes, the throbbing in my abdomen and leg reminded me of where I was.  That horrible, hellish burning was back.  I started shivering, because that's the way my body responds to the worst types of pain I've been through.  The nurse was giving me pain meds, but they only go so far.  They don't do crap for this kind of pain.  I gripped the bed and prayed.  Get me out of here, get me out of here.  It was deja vu.  That feeling of needing to be with my mom so she could pray over me.  I remember laying my own hand on my stomach as gently as I could, and just begging God for relief.  Please, Lord, relieve this pain.  I prayed over and over, and somehow I got through it.

By the time I got up to the floor and saw my family, I was exhausted, but in too much pain to sleep.  That night, I didn't sleep at all.  I would doze off for a minute, but then the throbbing would jolt me awake.  A few hours after the surgery, I noticed that I was laying in a pool of blood.  I freaked and called the nurse, who came in and tried to act calm, but couldn't hide her worry.  My drains (I had four of them) were draining too much, too fast.  I was bleeding from my abdomen, and I knew it was way too much.  The tech kept coming in and checking my vitals, and I felt sicker and sicker as I watched my blood pressure get lower and lower, and my heart rate get higher and higher.  Something was wrong.

Part 2 coming soon.

Today's motivation.

Bucket Listing.

I was having a heart-to-heart with my doc the other day, and broke down (again).  If I had a dollar for every time I cried at a doctor's appointment...  Anyways, I confided that I'm going pretty freaking stir crazy, laying in bed 24 hours a day.  I NEED TO BE MOVING.  I am such an active person-- my heart wants to be running so bad.  I am so damn sick of my BIG.  I don't want to have a BIG.  Can't I just go to work, go to the gym, hang out with my friends, go on dates with my husband...like everyone else??

"Be patient, Ames,"  he said.  "Your body was torn apart...we have to put you back together again, and that takes time.  We know you're a fighter.  Fighters have to have patience too."

Ugh... he's right.  I have to give myself time to heal from this illness and the 9 surgeries.  In the meantime, he gave me some homework.  He encouraged me to write a bucket list.  Not to be morbid, he assured me.  He just thinks it'll give me some things to look forward to and work towards.

So here goes.

Amy's Bucket List

1.  Go on a 2-3 week (or longer) sailing trip (on a sailboat)

here....I want to be here!!

2.  Explore Paris with my husband.  J'Adore la Paris.

3. COACHELLA!!!

4. Run my 18th marathon with my new leg.

5.  Skydiving 

5. Stay in an overwater bungalow in Bora Bora 

6.  Become a mom 

7.  Buy our dream house in our dream area (wherever that may be..hint hint Cali or Hawaii)

8.  Learn how to surf....and then surf ALOT

9.  Go on a mission trip with hubby to Africa...help a village that needs it in the name of the Lord.

10.  Go dog-sledding 

So, that's my first 10.  Those 10 are gonna keep me busy for quite a while, so I stopped there.  I wonder what will get checked off first?  

Showing up.

Friends..

I owe you all a post about these last surgeries (yes surgeries....one turned into two) and the complications that ensued.  Let me tell you, it sucked.  It did not go as planned and as a result, recovery has been hell on earth.  I was scared prior to surgery for the pain, but never did I anticipate what would ensue and just how horrible recovery would be.  This is the first time in 20 days that I've been able to sit up long enough to type this post.  I'm still really raw from what happened, and it's taking me longer than I thought to type out and relive what happened.  Slowly.. SLOWLY... I'm starting to have moments that the pain isn't so horrible I'm in tears.  It's been a bitch to be honest....sorry.  That's the only word that fits the situation.

But before I go into that, I have to get something else off my chest...something I've learned over this last year that has changed me as a person, as a daughter, sister, wife, and friend.  If you yourself have walked through the trenches of hell like I have this year, this is gonna resonate with you.

 It might be a fatal illness you yourself experienced- like me.
 It might be 10 painful surgeries that changed your life and body forever- like me.
 It might be that your son or daughter went through something like this- like my mom and dad.
 It might be that you lost your mom- like my friend Jaci.
 Or your dad- like my friends the Steinkes.
 Or your child-- like my friends the Staehelys.
 Or your unborn baby-- like my best friend Liz.

We are all going to experiences these tragedies in life...it is inevitable.  We DON'T live forever.  This time on Earth is short.... and it can change in a second.  Never did my husband expect that when he brought me to the ER last year, I'd end up almost dead, lose much of my leg and abdomen, stay in the hospital for 2 months, go through 10 horrible surgeries, be off work for over a year.  Our lives changed in a split second.  I went from a happy, healthy marathoner and nurse who was planning a wedding to a critical care patient with half her leg gone, on a ventilator, fighting for life.

If you've gone through something tragic, you realize just how important it is that people show up for you.  When I got sick, a million people showed up.  And by show up, I don't necessarily mean show up  at the hospital.  In fact, that was the opposite of what I wanted when I was at the hospital.  Showing up can mean sending a card.... calling....sending a text....writing a Facebook message....bringing dinner for the family.... or even just praying.  So many people showed up for me, and I am forever grateful to them for saving my life and keeping me going.

I learned just how important it is to SHOW UP.  We are all we have on this Earth.  And I honestly believe God put us here to SHOW UP for each other when we go through these horrible things.  In times of pain and frustration, we've asked ourselves, God, why would you do this?  Why would you let  me go through this crap over and over?  Haven't I had enough?  Damn.

God had to break my heart to make me the person I am now.  Maybe I was too selfish before.  Maybe I didn't have enough empathy for those around me because I had never experienced anything horrible until now.  Maybe I needed to go through this so I'd learn how important it is to let your heart break for someone else besides yourself.  Because that's who Jesus is.  And we're supposed to be modeling our lives after Him.

YOU.... YOU GUYS... have taught me how important it is to show up for each other in these trials.  You showed up for me, and it healed my heart.  Your messages, calls, texts, cards, visits, prayers.... made me realize how valuable these things are, and now, when I see a friend go through something that is their version of hell, I'm a better friend because of it.  Not every friend wants a bunch of visitors.... I certainly don't.  But calling and leaving a message, over, and over, even if they don't answer at first.... that means more to them than you'll ever know.  I haven't always handled friends' crisis' the way I should have.  But now I am and will continue to.  I recently had a friend who had a miscarriage, and I haven't gone through that, so I didn't know how to help.  All I could do was call...and text....and call... and leave messages.  I kept calling for weeks, offering to help in any way I could.  I just wanted her to know she was loved.  That I was there, walking alongside her.  That she wasn't alone.

My family has shown up day after day and have gotten me through this.  My mom's friends who are my prayer warriors....have shown up day after day in prayer.  My best friends- you know who you are- haven't stopped showing up for me.  Even if it's just a quick "how are you doing today" text... It means so much to me.

When we go through hell, we need each other.  Not just the first day... two weeks later, we still need it. I now understand how it must feel when you lose a family member and everyone calls at first, but a few weeks go by, and the calls stop coming, and you still feel like you're knee deep in shit and no one cares or understands.  Although that's not the case, and people get busy, or don't know how to help anymore, it still is a lonely place to be.  So I challenge you (and me) to keep showing up for each other.  Not just during the day of the crisis.  Two weeks later.  And three weeks later.  And a month later.  It doesn't take but a minute, but it can change that person's whole day.  Yesterday, I was a having a rough, feeling sorry for myself day, and I opened the mail to a package from my sister that was filled with my favorite candies and a gift card and a note.  It was so incredibly thoughtful and sweet and changed my day around completely.  I didn't feel alone anymore.  I felt someone walking alongside of me.

Showing up is one of the greatest forms of love we can show.  We're here on Earth to practice loving each other as much as we can, because when we get to Heaven, that's what it's all about... love.  Our time on Earth is the time we have to practice the love we're supposed to show in Heaven.  So why not put some practice in today, and show up for someone?

Next chapter...

Surgery #8 is scheduled for Jan 29th.  Sounds far away but its actually only about 6 weeks and I'm already scared.  Scared and excited.

Finally gonna get these scars fixed.  As Dr. G says "Ames, we gotta put humpty dumpty back together again."

We were thrilled to learn that insurance was gonna cover the bulk of this surgery.  We'll have to pay a little out of pocket b/c insurance doesn't cover anything, but it's doable and won't require a house-sized loan to pay for it.  Also, even though my work requires that my medical care be done at Alexian Brothers in order for them to pay the max, we found out it won't be that much more to have it done at Loyola...which is amazing news, because that's where I lived for two months last year...that's where my doctors are...and the reconstructive surgeon there is amazing and familiar with nec fasc scarring and how to proceed with the complicated mess of a body I have.  Plus, Dr. G and Dr. Mosier will be able to come and see me, and it's even likely they'll scrub in and help, since they know exactly what's going on in there.

All in all, it's scary, but necessary, and I'm excited to get it over with.  I wasn't sure if it would be years before we'd be able to afford to pay for this complex surgery.... I'm so glad that we're doing it now so we can move on from this disaster.  The recovery is gonna be absolute hell and I'm sure I'll have a few BIG chapters to cover it all.

In the meantime, I'm still in PT...working really hard, getting stronger.  I run way more than I should, but come on.  They tell me I can run 2 miles, I'm gonna run 10.  I can't help it.  The pain is motivating.  I've been through that before.  Honestly, if you can get through an 8 hour skin graft surgery and recovery of 7 surgeries, you can run 10 miles.  My right leg doesn't help me much, but my left leg has trained itself to take the bulk of the work.

Leaving for the Nec Fasc celebration Cruise in 3 days... I cannot wait!!!

BIG #22- Caught Up.

It took me an entire year, but I finally did it....

I got caught up with my BIG.  It took a year to write it all down the way it needed to be written.  A year to learn what happened.... to remember it....to process it.... to capture it the way it needed to be captured.  And now that I've caught you up to where I am now, in the present, it's almost time for the story to continue.

After the holidays, I'll be having my next round of surgeries.  The doctors haven't decided whether or not it will be one or two or three.... I'm hoping for one, but the recovery for one might be too much for me to handle, pain-wise and systems-wise.  I'm meeting with the reconstructive surgeon one more time to talk about what exactly these surgeries are going to entail and decide how we want to proceed with it.  With my anemia and extremely low platelets, they want to minimize the number of times I'll have to go under anesthesia, but they also don't want to do more than my body can handle.  Pray that we make the right decision about this.  I'm scared for the pain.... I remember exactly how the skin grafts and closing of the wounds felt during surgery #6.  It was pure hell on earth, and I know this one is going to be similar.  However, I lived through that and  I know I'll get through this too.  And at least with this surgery, I'm excited for the outcome--- reconstructing and fixing the scarring so that it doesn't look like a shark attacked me and ate half my body.  I will always wear scars-- lots of scars.... but this will improve things big-time.

It's what I need to be able to finally say I'M BETTER.  It will help me be able to move on and live again... to not scowl every time I look in the mirror.

There are other health issues related to nec fasc that are in the back of our minds and that may or may not be a problem in the future.  We're hoping and praying that necrotizing fasciitis won't rear it's ugly head in those areas of my health.  For right now, we're living in the moment, day by day, and fixing the wounds in the next step.

My leg is getting better daily.  I'm walking better, limp-running faster, and my endurance is improving.  I still have bad days-- today, for example, my knee was stiff and sore for no reason and didn't want to bend at all.... I ran on it and it made it even worse.  That's frustrating as hell.

I also need your prayers because of another issue I'm having with my bad leg.... I don't want to go into details until I know more and get an MRI, but please pray that it is nothing.

The next chapter of BIG will involve this next surgery.  Glad to have you prayer warriors on my side to  help pray for success with the scars and control of the pain.

I'm hoping that chapter of BIG will be the last.  I hope that necrotizing fasciitis stops there and a new chapter of life as a healthy wife, working, marathon running, starting a family takes over this blog.  Thanks for tagging along and helping me get through this BIG.

Until the next chapter....

Happy Christmas!  My Uncle Rick and Uncle Nick are taking me on a cruise to celebrate my survival.  When I was on my deathbed last year, they told me that I was gonna survive, and when i did, they were gonna take me on a cruise to celebrate me living through an illness that should have killed me.  We're leaving in a week on the Celebrity Silouhette and sailing to Jamaica, Haiti, Grand Cayman, and Cozumel for 7 days and I CANNOT WAIT!!!  I am blown away by their love and generosity.  I have the best family in the entire world...seriously...the BEST!

BIG 21-- thanksgiving then & now

Thanksgiving.

So much to be thankful for this year, it's not even possible to really put it into words.  I've felt it for a week, and its torn at my heart every day in every way.  Everytime I think about where I was last year, where my husband was, where my family was....it brings tears to my eyes.

Thanksgiving last year was horrible.  I was in septic shock, had already had four surgeries in less than a week, and was getting worse, not better.   On thanksgiving day, I went in for my fifth surgery on my leg and abdomen.  Jon and my parents, brother, sisters, and cousin Bryan didn't leave my side during the entire week of thanksgiving.  Although I was on the vent by the time thanksgiving rolled around, I was still so incredibly unstable, that all my family could be thankful for was that I lived another day.  My lungs and heart were working on overtime-- I was literally panting for air and my heart beat was racing- it was as if I was running a marathon 24/7.  And thank God I'm a marathon runner, or I wouldn't have survived one day of that.  At one point, they tried to reduce the sedation, and I just about coded before they re-vented me.  I had a constant fever- usually around 101.5-102 during the day, but at night, it would always creep up....103, 104, 105.  Just thinking about it makes me shutter.  My family was told that I was so unstable that it was quite possibly that I'd be alive one day and dead the next.  There was very little hope.  Almost nothing to hold onto.  Except each other.

There was talk that it was time to do a tracheostomy.  Somehow they were able to avoid that, THANK GOD.  I have enough scars, thank you.

Needless to say, a year later, we have so much to be thankful for.

I'm alive.  I'm improving and recovering.  I'm God's chosen miracle.

Coincidentally, I've had some huge breakthroughs in PT this week.  It's like my minuscule quad muscle is finally deciding that it wants to work again.  I leave PT and the gym in tears most days.  But tears or not, I don't give a damn.  I will not stop.  I'm thankful for my natural competitive nature and inherited strength. With an illness like necrotizing fasciitis or cancer for example, you have to fight for each day, each step. The fight never stops and most times it gets harder, not easier. We have no choice but to become stronger fighters if we want to live and get better... And this makes us so, so strong.

Sometimes you have to be pounded down to really grow.  And it sucks, to be honest.  It's not fun.  No one looks back and says, I had necrotizing fasciitis, almost died, had 7++ surgeries, lost my hair, lost most of my leg which is necessary for me to run, which happens to be the love of my life, and am covered in scars..... dang I'm so glad I went through that.

No. We get mad.  We get sad.  We grieve.  We accept.  We learn.  We grow.  We become strong.  And in the end, although we hate what happened, we learn that we are forever changed, in a good way.  We are so very strong.  We work hard for every damn step we take, every accomplishment in physical therapy, every new obstacle.  We cry in pain, but we keep freaking working hard because WE HAVE TO.  Because WE'RE STRONG NOW.  A new kind of strong.  And we're newly brave, too.  Did you ever stop to think just how freaking strong and brave and fearless that cancer patients are?  Yes.  We fought and we keep fighting, and it gets harder, not easier, but we're damn blessed because we're new stronger braver souls.

We see the world differently, since we lived through these battles.  Each day is a blessing, in our eyes.  We love our family in a bigger, more beautiful way.  Because we see the pain in their eyes as they tell us how sick we were.  How bad things were.  How they don't want to talk about it, because its too painful to think about.  But they never stopped hoping, praying, and they never left our side.

All these things, all these changes, makes me thankful this year.  I'm thankful that I get to spend this week with my family, celebrating life, instead of fearing my death.  We're gently walking through this week together.  We have to be gentle with each other, because the pain of what happened is still so present and fierce.

And I'm thankful that God allowed me to live and marry the man who sat by my side for 2 months in the hospital.  The man who never stopped loving me, never gave up on me.  Who cheers me on when I have a good day in PT.  Who holds me when I cry in pain or frustration.  And who told me yesterday that every time he sees my scars, it makes him love me even more.  Because it reminds him that I am a brave, strong, badass, fighter.  It reminds him of how far I've come.  Of how blessed we are that God saved me and gave us to each other.

Thank you God, for this Thanksgiving.