Through it again

I started this post Wednesday night after I had the procedure done to open the stenosis in my veins.  I’m going to finish it now and get it up for you, but please note I’m dealing with a computer issue.  To get the full effect, you need to see two imaging printouts I have, BUT my scanner decided it doesn’t like my computer.  So check back for that!  🙂

It’s the middle of the night on G-101, the Transplant Special Care Unit at the Cleveland Clinic.  It’s 2.29am, to be exact, and things aren’t exactly quiet.  The buzz of new transplants is in the air.  Several new patients are joining the floor, and more are waiting in the post-surgical ICU to come up.  The nurses are busy, and thank goodness I’m not needing them too much tonight.  Other than pain meds every two hours and anti nausea every six, I’m hanging tight dealing with my never-ending insomnia by getting some work done on my computer.  I still have that wide-awake yet very drowsy feeling of post-anesthesia and pain meds.  I just ate a bowl of Cheerios and am sipping on some milk, mmm.

Yesterday’s procedure went very well.  Dr. Sands went in through my ribs and threaded a stent to where my left renal vein and portal vein connect.  The stenosis in the reno-portovenous anatomic stricture was very bad, and the doctors were thankful they caught it in time.  The stent is now in place, and…

… apparently that’s where I got distracted, fell asleep, decided to call my nurse for more meds, etc.

So anyways, Thursday’s ultrasound showed the stent was doing well, and we saw increased perfusion to my liver which is exactly the result we wanted.  With such a narrowing, my liver wasn’t getting enough blood in/out.  So now the stricture is wide open with blood evenly flowing as it should.

I have a “before” and “after” scan from my doctor that shows several cool things, including all of the new blood flow to my liver.  When my scanner decides to work, I want to post it for you.

For now, thank you again for all of your prayers!  Tomorrow I go back to normal life – driving, events, nannying… everything I love so much.  It’s been (almost) six weeks since my splenectomy and other than incisional pain and referred nerve pain in my left shoulder/arm, I’m doing very well.  I’m back in sewing class, I’m participating in an event at school tomorrow about our Ireland trip, I have a busy social schedule, and I’m finding time to rest and read and enjoy these slower days before things speed up in the new year.  Right now, I feel safe and content.  I figure if I’ve been though this much, if God’s carried me through pain this deep, then how much worse could it really ever be?  God is my provider, and “an ever present help in trouble.” (Psalm 46.1)

Remember that this week.  Oh how He loves us.
Amanda

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.

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

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