Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.  (Yes, I’m a nursing student who has a penchant for research.)  I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.  Very cool.  And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”  If you’re interested in medicine, check the link above.  If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body.  

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)  No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.  Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.  Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.  Remember, it was never in fact proven.  In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.  When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.  To sum all of that up, my tumor may have been completely benign.  Yes, it may have been cancerous, and the chemo may have just cured it. But the catch is this, chemoembolization is rarely successful with just one treatment.  We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.  Because it may not have ever been there.

That was a lot to take in while it was a relief as well.  The day after I had the scan that found the tumor, my doctor said it was cancer.  It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.  That’s a lot better than 3x/year for 5 years.  And it’s so much better to know that the tumor wasn’t positively cancer.  They can never say never since nothing was proven or tested either way, but the tumor was likely non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good.  Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all perfect.  I don’t know if they’ve ever been perfect.  So grateful.

Chris Tomlin – How Great Is Our God

Today, I was afraid, but I felt the prayers of what I believe has to be thousands of people by now, all thanks to family, friends, the internet, and how fast word spreads across prayer groups and social networks.  I had many appointments at the Clinic, including one to see my hepatologist, another to see the interventional radiologist who performed the chemoembolization to destroy the 3cm tumor on my liver.  Some touted the miserable procedure as fool-proof, but my hepatologist today told me that most people need it done every two months until transplantation.  (If the tumor grows past 5cm, UNOS will deny you a transplant.)  He said to be prepared for the radiologist to want to do the procedure again, for the tumor to still be there in one form or another.  At any size, they will want to make sure it stays small or gone.

Well look at these images.  One was taken during the chemoembolization of the tumor on my liver.  The second is what a MRI revealed my liver to look like this morning.  It doesn’t take a genius to see the difference.

Once the doctor showed me what the other organs in the scan were and I could identify the two images of my liver, tears came to my eyes. Look at my scans below – My liver a month ago, and my liver this morning.  I had 2 separate types of scans so that’s why they aren’t identical, but I circled and labeled my liver in both pictures in white so you could see what/where it is. I tried to label the other organs as best as I could remember.  The first liver’s big, cloudy spot is a ton of vasculature over a tumor.  The second liver is tumor-free, clean.

TumorNo tumor

The radiologist said he was perhaps too aggressive with his treatment, but after hearing from my hepatologist who specializes in liver tumors that the first treatment doesn’t ever handle it all, I am thanking a higher Power for handling this situation for me.  Yes, I still need a transplant for many other reasons, but praise God the tumor is completely gone, and I will not need to go through chemoembolization again.

And now for a worship favorite…

The splendor of a King,
clothed in majesty
Let all the earth rejoice,
all the earth rejoice
He wraps himself in light,
and darkness tries to hide
it trembles at his voice,
trembles at his voice

How great is our God,
sing with me
How great is our God,
and all will see
How great
How great is our God

And age to age He stands
and time is in His Hands
Beginning and the End,
Beginning and the End
The Godhead, three in one
Father, Spirit, Son
the Lion and the Lamb,
the Lion and the Lamb

How great is our God,
sing with me
How great is our God,
and all will see
How great,
How great is our God

Name above all names
Worthy of all praise
My heart will sing
how great is our God
Name above all names
you are worthy of all praise
and my heart will sing
how great is our God

How great is our God,
Sing with me
How great is our God,
and all will see
How great,
How great is our God

How truly great is our God.  He still does the miraculous and answers when His people pray.  Thank you for all of the love, cards, comments, emails, and mostly your prayers on my behalf.  Our Lord heard each and every one.

We are blessed to serve the One who holds our lives in His hands.
Amanda

Oh, and a quick shot of my bestie, Jen, when she came to visit me during the chemoembolization.  (I was pretty out of it on my pain pump – she’ll tell ya!) I had another visitor, too, and my sweet mom stayed the night with me.

Me & Jen

Prayers for this week

I saw my primary care physician today and she’s starting me on B-12 injections to hopefully improve my energy.  She wrote me a Rx for enough Ativan to take me around the clock for a few months, and right now, my nerves need that. This waiting, constant waiting, is the worst part.  Thankfully, my friends and family have been good to help me keep busy and out of the house.  Additionally, I always have different friends over to hang out and watch movies, and a few of my kiddos’ parents are letting me sit despite the chance I could get “the call” during their outing.  I have a few whole-day outings on my calendar, have spent a lot of time with the children I sit for as well as close friends, and all of these things help me to feel normal rather than a prisoner to the telephone and some treacherous surgery looming in the distance.

I have about 6 appointments at the Cleveland Clinic on Thursday, including a scan to make sure the tumor is gone.  Please lift me up to our God as we trust that He and the chemoembolization took care of the tumor, and all will be well. Thursday will be a long, hard day – those long runs from office to test to office always are, and finding out about the tumor is frightening to me and I know my friends and family as well.  Pray for us to have peace about it and be able to trust completely in our all-capable Lord.

So today, I starting to get cards and gifts from people I don’t even know.  I’ve met a lot of new people through this journey, but I’m saying that I have cards from different states from names I don’t even recognize.  They hold Scripture and words of encouragement, and I thank God for all of you who are taking the time to send something to a girl you don’t even know.  As for those I do know, your encouragement, support, and understanding speak volumes as well.  So many have asked me, with voices of honesty, “Is there anything I can do to help? I’d really like to help you during this time.”  God bless you all, and thank you for everyone who has done anything for me – prayed, shared a gift or card, or even just smiled at me – during the past nearly two months.

Please keep me in your prayers on Thursday, and I will post an update when I get the opportunity.

Love and gratitude to you all,
Amanda 

Getting closer…

Just wanted to say hi, and let you know I’m moving up the listing!  The coordinators are hoping for a good weekend, seeing it is a holiday weekend.  (Extra traveling = increased wrecks, motorcyclists, just overall accidents are increased when you get people together, there’s drinking, there’s fireworks, etc.)  I already know I’m around spot 6 on the list for my blood type, but my social worker says I need a small liver for my size, so that will take some time.  However, if one becomes available, there’s better odds the people before me are larger in size and won’t be compatible.  We’re really thinking July’s the month, and definitely not past the end of August.  There’s a ton of events coming up that I really don’t want to miss out on, so hopefully, I recover fast or probably worse, have to wait till the end of summer for surgery.  According to the official guide “binder” all about liver transplants (a genuine Cleveland Clinic compilation of a whole lot of way too much information), the hospital stay is 1-6 weeks, average 2-4, and I cannot lift over 10 pounds for 6 months.  I am a nanny, so that will not work.  That fact alone wants me to get the liver today.  Rejection and infection?  That makes me want to wait as long as possible.  I feel like a kid when it comes to this stuff.

BUT I am overconfident after last week’s chemoembolization.  It has surpassed my bone marrow testing (age 5) as most-pain-in-entire-life, so I’ve pretty much assured myself that if this is possibly THIS painful, a liver transplant has to be a piece of cake.  I’m most honestly scared of the breathing tube and central line and staples, and those come out respectfully, in 1 day, a few days/weeks, and a few months.  This chemo pain?  UNREAL.  I start crying every time I try to describe it.  It’s crushing, stabbing pain on your right side that feels like you lost a few ribs, and makes you wonder if those ribs are lodged in random organs because taking a breath is THAT bad.  After 24hrs of hydrocodone pills, I developed hives, so I am currently unmedicated and not happy about it.  The secretary says “I can’t find your doctor.”  Yeah the one who did this to me and didn’t warn me about the pain?  I don’t like him very much at the moment.  I have a call into my other doctor trying to get something to at least take me through the night.  I tried to “be strong” and not take the pills because I know how bad for my system they are, plus during my mini-coma, I didn’t feel pain anyways, but I caved Tuesday, and broke out in hives Wednesday.  If I don’t get a returned phone call in the by 4:00, I’m going to the emergency room and getting put on a morphine pump like I had last week.  I’m not kidding either.

In all honesty, I will say I wish I could stay on the list forever.  As I realized and told my mom today, I’m grateful I’m not literally dying, so this is just, at this time, for “quality of life,” depending on if the chemo got the tumor or not.  In all likelihood, it did, but we won’t know till 6 months to a year when I get another scan.  I was told they like to wait as long as possible before putting you under radiation again, which almost doesn’t make sense, but I’ll go with it.  They say this procedure almost always gets the target tumor since it’s an exact chemo hit, but it’s too new to have many stats.  So instead they blasted chemicals into me like a guinea pig and called it a day.  Then my doctor probably went on a cruise, that’s where I imagine he is right now while I’m in so much pain.

I could list the pros and cons of this whole mess all night if I could, and I have so much extra time on my hands that I probably could.  But I won’t.  Because I know how to get miserable real fast, and that will get you there.

So for today… I’m still here.  Waiting for what I fight for, what I don’t want to be fighting for.  I miss my kiddos, I miss the world around me, I don’t like what has happened to me, and it’s ONLY through prayer and God that I know somehow I’ll get through this.  Especially with my doctor on that cruise ship.  He’s probably downing the morphine himself, laughing at his cage of innocent guinea pigs.  I do feel like a human needle cushion, but that’s an entirely new rant…  Especially when they ABG tested me (the king of all blood tests with a ginormous needle – yes, I’m a nurse, and I saw it the other week, and it really is as big as they tell you in nursing school!) and then realized they didn’t have to do it.  

One day at a time.

Thanks, once again, for your prayers, for your thoughts, and for all the cards that are still piling into my home.  ”Thanks” sure doesn’t seem like much but it’s all I have right now.  Each and every one of you mean the world to me.

Love,

Amanda

Over

Just finished three doctors appointments in one day. Preceded by a chemo-induced (freak side effect) coma that lasted two days (Friday thru Monday, kind of felt like five) & somehow, fed the anesthesia-induced amnesia that began two weeks prior. If it happened in the last 2-3 weeks? It likely won’t be in my memory. I blame the chemo since it was the only “new” factor added to the mix. And I got antibiotics, pain meds, and nausea meds to add to my current drug lineup.

In other news… Right, because there is no other news. I fit in laundry today. I opened my huge stack of mail, convinced I just returned from Florida. (My mom corrected me, I was admitted to the hospital Thursday, so I technically missed three mail days.) So I shop online. A little too much. That’s really all. Unless you care to know about my mom waking me up at 3am to make sure I got my antibiotics on time. (I love how she figured it out just 4hrs before I “woke up”) I only have ten days of these but we already may have missed a couple doses.

Just wanted to let you all know I’m still alive … a few of you have checked, and it’s nice to know I’m cared about. And thanks for the cards… all I can say is WOW! I literally have run out of room to display them all!

Love to you all…

Amanda