The Stone

Hi everyone, my WBC dove again and we’re starting Neupogen injections again. How much I hope these are the last in my life!  Other than that, it’s been a slow day.  Cleaning and organizing and packing for the hospital.  

I don’t like to crowd this site with everything I read or hear, but for this day, I feel this calms so much confusion in my mind.

On quiet hearts, please join me today in reading Angie Smith’s newest blog post, “The Stone.” An excerpt:

…So many times in this life, we are convinced that its money, recognition, approval, accolades, or degrees that give us credibility and will make us feel like we’ve made it. And it’s easy to fall into the trap, because let’s face it-the world loves the shine. I get it. I mean, I GET it.

But what if we had something that was so precious that we didn’t even let the world tell us what it was worth?

We would protect it, keep it close, and pray that it would always be ours, wouldn’t we? This is how I want to think of my walk with Christ…like this stone. I can torment myself over the questions I have for Him, the doubts I feel sometimes, the genuine curiosity about my life. But instead of spending my days chasing after answers, I have decided that I have something much more beautiful.

I have the stone.

Given to me as a gift I never could have earned.

Worn proudly by His bride.

Cut at great cost, over and over again until the sun fell down and the curtain was torn in two.

For me.

For you.

Oh, precious One.

May I be a reflection of Your great worth all the days that You give me.

Angie Smith, Bring the Rain

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Soon Friday

Friday’s coming so fast – surgery, again.  Being sliced open and left in major pain, again.

Sigh.

Someone asked me if I was scared.

Of what?

Of dying on the table?  No.  Of the pain?  Scared isn’t the right word.  Of staying away from home, sometimes by myself, for a week?  Yes.  Of being woke up each morning at 5 for labs and residents?  Scared, no, but dreading, yes. Of anesthesia?  Quite the opposite.  Of getting out of bed the first time post-op? Absolutely.

About this whole surgery – it’s weird.  The transplant was sudden, phone-call-at-1:30am type of surprising, so I’m having a hard time knowing what to do with a scheduled surgery.  Most of all, I’m wishing it didn’t have to happen.  Although, I really hope it makes me feel better.  All the doctors say it will.  But once you have staples holding your entire abdomen together once, you never want to go there ever again.

Life as a transplant patient is much different that you’d think from the outside.  It’s much different than a pre-transplant patient could ever understand.  I talked to our Team’s psychiatrist about it and asked her if she finds it common that patients – even while prepared and educated pre-op – can never truly comprehend everything their Team tells them about life post-transplant… if they just can’t grasp it all, whether they are avoiding it or just overwhelmed by the amount of information to take in.  She said she’s often thought the same thing.  It’s just the way it goes.  Then you spend your entire post-transplant life hoping you’ll be one of the successes, one of the 85% of liver transplants that make it, God forbid one of the 15%. You do all you can to prevent rejection and infection, spend all your life coordinating meds, side effects, and regular tests to make sure you’re still in the clear.

As you all know, it’s a game of white blood cells lately, and my WBCs hit 0.8 last week. You guessed it, I was on Neupogen injections (again) all weekend.  My labs just keep getting worse, so the surgery needs to happen now.  For those who asked, I’ll be getting blood transfusions to make sure my levels are high enough to get through surgery.  Even my family seems more worried than I am.  While this will be no fun, I don’t think it is a bad thing at all.

Although I thought that about the transplant…

I will never, ever be the same.  I don’t think it’s my fault, but I know it’s my fate, forever my future.

And while so much is unknown, and there are so many questions to ask… to God be the glory.

Note: Contact information added to link column (top right)  No unexpected visitors, please.

Weekend prayer request

Friends,

I know I checked in the other day with a good update, but today, I come to you with a prayer request that will be heavy on our hearts for a few weeks, until my surgery (splenectomy) day of August 5.

As we’re on our way to Chicago for the weekend, my oncologist just called to let us know my labs yesterday showed a WBC of 0.84 – the lowest it’s ever been for me. We’re now past critical level. This is a dangerous level, and I need to be extra vigilant about germs so I don’t end up sick in the hospital like last month.

Most importantly, the count has to rise or they cannot perform the surgery. Surgeries carry huge sources of infections for many reasons, so my defenses must be higher before they will take the risk.

The problem is, I NEED this surgery. This surgery is extremely (99%) likely to fix the WBC problem in the first place. Ironically, what could prevent me from having the surgery is what the surgery is supposed to fix, to heal.

The good news is my doctor prescribed Neupogen injections for a few days. The bad news is, it’s Saturday and no one near our destination can get them in until at least Monday. We think we finally found a place, though, so fingers crossed! The other bad news is these raise my counts very temporarily and won’t last me until August 5. Sure I could do another run of them around then, or perhaps a transfusion, so we’ll see. It will be up to my doctors.

We are just humbly praying this surgery will still take place on time, God willing.

If you could join us in prayer, I know my family and I would be so grateful. Your prayers have kept me safe for over a year now, and I don’t know how to thank you.

Love and blessings,
Amanda

Just waiting…

My morning started bright and early with my doctors completing their assessments and nurses and techs beginning to obtain their orders and tests. At 5/6am.  I forgot how fun this part is.  Reminds me my post-surgery days!

Oncology said they want to look further into giving me Neupogen injections to increase my white cell count.  My opinion is that, if they work, then praise God.  If they don’t work, then at least we gave that option a second chance. Who knows, maybe it will take a new team of docs to solve this mystery of a problem.

Afterwards, my PCP came in and said he doesn’t see me going home unless my WBC increase significantly or my pneumonia clears (judging by his conversation with us, he is not looking for me to get better much soon).  He said it’s one or the other.

And so we wait.

For the rest of the day, I enjoyed several friends coming to visit, and I enjoyed that a lot.  It’s pretty bored on this unit even though I have a lot of things from home to do.  Plus the morphine is knocking me out and I’m on it around the clock right now.  So yes, pretty tired, too.  But this is life right now.  I’ll be back with an update when I get one, and I desperately hope it’s positive!

Here are beautiful flowers my friend, Lydia, brought me yesterday

flowers from lydia

Epstein Barr & Neuopogen Injections

My transplant coordinator Molly called me mid-week.  Amazingly, the EBV level in my blood is now negative.  I haven’t been on the Valcyte that long, so my team is surprised, to say the least.  I believe it was your prayers. Thank you.

On the other hand, my WBC level hit 1.26.  (Normal range is around 4-10.) Both the Valcyte and my Cellcept could be contributors to this, so they took me off of the Cellcept.  To take me off of the Valcyte with EBV so recent is a risk, so I will finish out another month of that. 

Either way, I was/am too neutropenic to stand any infections that may be floating around, so my surgeons started me on Neuopgen, aka the injections chemo patients give themselves to increase their immune systems.  They prescribed me a series of three injections, and, once my insurance finally approved them, I picked them up yesterday.

Neupogen

I know a lot of people give themselves injections all the time – insulin, these Neupogen injections, all kinds of things.  After you do it a few times, I’m sure it’s not that hard.  And as a senior in nursing school, I most definitely know how to give an injection.  It’s just the whole idea of pinching my own skin, darting a needle into my own body, aspirating, and pushing the drug into my tissue.  Pressure and out.  To my own body?  Yes, emphasis on that.  No thank you.

After hearing my fear, Molly suggested I go to the doctors office and have the nurse there do it. I called them and made an appointment. What a great idea, I thought.

But then I thought, what kind of nurse am I?  I can give injections to patients but not myself?

So I gathered my mom and my dogs for support, sat at the kitchen table, pinched my thigh and darted the needle in.  Aspirate, in, and out.  

And it wasn’t as bad as I thought

I did it again today, and still, not as bad as I thought.

Honestly, I’d like to do this a few more times so I can see myself get really good at it, but tomorrow is my last injection.  Wanting to give myself injections means I’m a nurse, I think.  Or just an overachiever who doesn’t want to quit until I’ve perfected it.  But on the other hand, I’m glad to see them go.  The side effects of Neuoogen include bone and muscle pain, which I am definitely noticing.

You know, I never thought this would be part of transplant life.  Yet I never thought I’d get EBV in the first place.  And then again, I never thought my hair would fall out and the surgeons would be super picky about any help I try for my back pain.  I never thought they would actually rescind my clearance to drive for a couple of weeks last year.  I never in my wildest dreams would have imagined a scar this big, and I never thought it would still ache, 4.5 months later.  I never thought I’d have this many insurance problems with medications, and I never thought medical bills could actually go this high.  I never thought I’d be so scared, yet I never thought I’d ever find the kind of peace I’ve found in the last few months.

Transplant life definitely isn’t what I thought it’d be, yet for these extra days of life, I definitely can’t complain.  I’m truly so grateful, and these are all small sacrifices for the gift I’ve been given.

Here’s hoping my white cells are in normal range Monday.  Molly expects it to be really high.  We’ll see!

Have a great weekend, sweet friends.

Amanda

– Written yesterday 🙂