Here I am Lord, send me

After this long night, it will be the time for my now annual checkup to make sure my body is doing a good enough job housing my donor liver and that nothing has turned hostile.

Today is the day I get to remember what’s actually possible and how grateful I am that it hasn’t occurred. …yet…

Every 6 months, I need to get a CT scan and labs done to ensure my body is still cancer-free. We look at organs, tumor markers, you name it – just looking for anything we can find to be wrong.

No matter how much faith I have, how many people I have rooting for me, no matter how much strength I can muster to get through each day, every 6 months I am left in a place I’d rather not revisit.  After all, it wasn’t but a little over 2 years ago when on this visit, I found out a tumor plagued my liver and I’d be instantly put on the transplant list.  What a difference an afternoon makes.  Oh, how ignorance is truly bliss.

The what’s and when’s replay in my mind even when I shoot them down. The statistics of recurring tumors and cancer and even kidney failure as a result of my medications… So many complications wouldn’t be a surprise. I’ve given up on sleep tonight.  I usually handle this better – much better – but lately, I’m just sick of being the patient.

Yet I know even if the worst did happen, I’d get through it just like I got through the past 20 years of sick and surgery and struggle. I’d get through it with my God and the wonderful people He has put into my life.

Aren’t we promised we have nothing to fear? Then why am I curled up in fear pleading with God to knock me out or let the Ativan kick in

This is uncensored real life, everyone. Sometimes there’s just no point hiding behind the wall.  This is me, and when you, God forbid, get to a similar point in your life, you’ll understand.

Please pray for me today for…
1) the stamina to get through a grocery list of tests and appointments
2) kindness when it’s the hardest
3) God’s will be done
4) I maintain an open, accepting spirit. “Here I am, Lord, send me.”

 Kelly Clarkson: Up to the Mountian

Oh, this is what it feels like…

I love you all and pray this away from each and every one of you. ❤  Please pray I get through this, one day at a time.

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9 months & Bone Marrow

It’s been awhile since I’ve been able to post, but Northern Ireland was amazing.  Absolutely a dream. I was able to push through these barriers and complete my assignments for the course, which honestly, was a surprise to me.  We learned so much on the trip in class and saw so much of a beautiful country. I did catch some kind of infection there which was cured by antibiotics my doctor prescribed for me to take on the trip, and I had a lot of back problems, but other than that, no big health issues. I fell asleep in some classes (thanks, low WBCs) and napped a lot, but I still got through to the end!  My Ireland blog is here.

To understand where I’m coming from, let me tell you a story.  Two decades ago, when I first got “sick,” the doctors were sure I had leukemia. They did a bone marrow test to confirm their diagnosis, and it put fear into a 5 year old that would never go away.  I remember being wide awake and feeling an incredible amount of pain.  I remember hearing the drilling and noises, and I remember everyone talking and me screaming, and the nurses holding me down asking me to “Be still!”  I had no idea what was going on, but I knew it wasn’t going to happen again.  My mom later told me that she could hear me screaming during the procedure and had to go to the restroom and throw up.  My mom’s super strong so it must have been as bad as I remember it to be.  Thank God, it came back negative for leukemia, but the whole situation made my fear of everything doctors and hospitals even worse, and I was scared they’d do things like that to me again.  I got over my fear of doctors and hospitals – I had to – but I never trusted them over any kind of procedure ever again.

Fast forward to December when I had a liver biopsy.  They told me they were giving me sedation and pain medication, but I felt every bit of it, and was wide awake for the whole thing, and it was not a pleasant experience.  So I really have an issue regarding doctors and their exaggerated descriptions of procedures and pain.  “Twilight sedation” or the whole fentanyl/versed combo?  I don’t buy it.  You’re not calm, you’re not asleep, and your pain is not controlled.  The biopsy was the “icing on the cake” that made up my mind that conscious sedation and the like are terrible, cruel ways to try to help a patient.

Anyways, it’s been 9 months since my transplant. Everything is looking good except this WBC issue I’ve been talking about for awhile now.

Last week for first labs home, we learned my WBC level is 1.1, lower than before. My oncologist scheduled my bone marrow biopsy for Wednesday. Remember I told him the only way I was doing it was under general anesthesia, which is where you are 100%, completely asleep.  He wasn’t thrilled about that and tried to persuade me to get it done normally under light sedation, so I begged.  I remembered being 5 years old, being alone and tortured, and I begged some more.  My mom was there and agreed with me, telling the doctor what I was saying was true and I couldn’t get it done like last time.  No procedure room, but an OR.  No light sedation, but general anesthesia.  Thank the Lord, he gave in.

It took a month to get this out-of-the-ordinary procedure/set-up coordinated, but Wednesday is the big day.  I still hold the fear I had as a child because I don’t trust this doctor 100%, and I’m scared how painful it will be.  Was my last experience so bad because I was little and just remember it to be like that, or was it truly horrific?  Was the pain that bad?  I’ve heard some people tell me it’s pretty bad, so we will see.

You know it’s funny I’m more scared of the procedure than the results.  I just want results, period.  I don’t fear what they may be – I just need my doctors to find answers on what is causing this and how to fix it.  Whatever the diagnosis may be.

Please pray for strength, peace, and answers.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
Isaiah 43.2

Awesome things

Tuesday, I told you how my lab numbers indicated rejection.  This was the second time since my surgery that my numbers threatened the worst.  So many of you told me how you were praying for me. Thank you.

Wednesday, I found out that like the first time, God changed the outcome.

Obviously, clinging to the promises of God works.

My labs split in half in only two days.  My coordinator says there’s no explanation.  (We know why, don’t we?)  We know they’ll be even lower by my next labs on Monday. 

For when you did awesome things that we did not expect, you came down, and the mountains trembled before you.

Isaiah 64.7 

Awesome things indeed.

3 Month Update & A Prayer Request

Hi everyone,

Just a little update and a prayer request below.

I’m doing so great.  It’s been 3 months since my surgery, and I can’t help but reflect on where I’ve been.  Thinking back on my life with liver disease, waiting for the transplant, the surgery, the pain and horror, the blessings and overcoming… I’m still taking it all in.  Every time I see the huge scar on my abdomen, I want to complain and wish it gone, but then I remember it’s a symbol of where I’ve been and the story I have to share with the world.  This story, this journey, is not just about the 12” of scar I have going in 3 directions – it’s entwined into every part of my being.

Yes, of course there have been setbacks, but I’m used to them.  Not too much phases me anymore.  I’m grateful for this new peace I have.  Whatever comes, comes.  I think I finally understand the resilience you see in people who face huge trials.  Once you’ve been through so much, you are accustomed to fighting, struggling, and don’t fear the future.  You’re so thankful for the calm times but aren’t worried about the storms. After all, if you’ve already been through the worst, how bad could the future be?

This week, one of the surgeons officially cleared me to resume nursing school in January, so barring any complications with the College of Nursing, I’m good to go.  I’m so excited to dive back into what I love so much, with more compassion than ever.  I have some fears like “What if I forgot it all?” “What if I haven’t recovered enough?” but my heart knows it’ll be just fine.

Wednesday is a big day for me.  It’s time for my 3-month-scan to make sure the tumor hasn’t returned.  If you remember, I was diagnosed with Primary sclerosing cholangitis (liver disease) at age 5, and I was transplanted because it turned into a tumor in May of this year.  Chemoembolization eradicated the tumor.  While the pathology reports on my old liver and lymph nodes showed there were no signs of cancer, as a precaution, I have to have scans and special labs done every 3 months for the next 5 years just to make sure it hasn’t come back.  From what I understand, it’s just a contrast MRI (which I’m used to) as well as testing for “tumor markers” in my blood.  I really don’t know that much about it, but of course, I’m eager to learn.  I’m honestly a little scared about it simply because I don’t want to go through all of this again.  Please join me in praying the tumor is gone for good and that I continue to recover quickly.

I love you all, and please remember to take time to be grateful for life during this busy, stressful season.

Amanda

6 weeks!

It’s official… 

I’ve been living with my new liver for 6 weeks now.

This week has been my best week yet, and I’m really feeling good.

Not perfect, not as good as before the transplant, and my incision is still open (but healing!) but I’m doing so much better than last week, last month, and definitely 6 weeks ago when I had just been through an 8 hour surgery.

Thank you for everyone who has read my updates, said a prayer for me, sent a card or gift… and thanks to the almighty Healer who hears his children when they cry.

Amanda

God is within her, she will not fall; God will help her at break of day.

Psalm 36.5, and probably one for the “top favorites.”  

On another note, yesterday was a really good day. I got to run errands after labs, go out to lunch with my mom and sister, and have a big dinner with my family, including my uncle, cousin, and Poppop!  (Click to see pictures)

Anyways, God hears our hearts, and He hears our (your) prayers.  Thank you from the bottom of my heart for all the prayers you’ve prayed on my behalf and all the love you’ve poured out onto me.

And just to sneak in an update, my homecare nurse came today and was shocked how well my incision is healing.  Keep praying because when it’s healed, I can drive again!  😉

Love,
Amanda

Amy Grant – Better Than A Hallelujah

God loves a lullaby
In a mother’s tears in the dead of night
Better than a Hallelujah sometimes
God loves the drunkard’s cry
The soldier’s plea not to let him die
Better than a Hallelujah sometimes

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

The woman holding on for life
The dying man giving up the fight
Are better than a Hallelujah sometimes

The tears of shame for what’s been done
The silence when the words won’t come
Are better than a Hallelujah sometimes

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

Better than a church bell ringing
Better than a choir singing out, singing out

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

Better than a Hallelujah sometimes

{Amy Grant}