Lately…

Posting this from October 1:
It’s been awhile!

September was a busy month but I did have my annual checkup with my transplant/spleen surgeon. I had my CAT scan and tumor marker labs and I am tumor-free! Not a trace in sight! My liver is doing so well that we reduced my anti-rejection medications by 0.5mg. I got a clean bill of health, considering the grand scheme of things.

I had some migraine infusions throughout the summer and then found a neurologist who works mostly on headaches and migraines. She changed some meds and scheduled a procedure, so let’s see how that goes later on. I’m very hopeful about her. She is a Cleveland Clinic doctor, as all of mine are.

Now it’s October – my, how time flies! I’m currently at my second ketamine infusion. Ketamine is an anesthetic agent but studies have shown that it can have nerve pain-relieving qualities. At an appointment in September, my pain management doctor and I agreed we had exhausted all options. We have tried everyone and everything and I still live in pain. So she explained ketamine to me and told me we could to try it. I eagerly signed on.

Last week, I had a ketamine infusion and another today. I lay down and get an IV of ketamine with Versed (midazolam) to counteract its side effect of anxiety. It IS anesthesia so I do get dizzy and tired, so I mostly sleep and sometimes work on my phone/iPad when I’m not too dizzy to read. I find it helps if I close one eye. Things don’t blur and spin as much. 😉 But the great news is that these treatments seem to be effective so far. My doctor is highly regarded and esteemed, and I’d trust this one with anything. She says ketamine can be uneffective, or work for weeks to months. Hey, I’ll take whatever I can get! I’m very hopeful about this one. Pray for me, friends!

I came home and meant to post that for you all but of course, I was too tired and the iPad didn’t seem to want to sync with the iPhone or laptop.

Since then, more ketamine good news.  I go back in 2 weeks for another, and I’m excited.  It’s really taken the edge off of my pain which is SO. NICE. I am exited to see how the third one helps as they supposedly build on each other.  The only downside is I need 2 days off each procedure.  One for infusion day and the next for sleep-off-the-anesthesia day. 🙂

I’ve been busy lately, especially trying school for the first time in over a year.  I’ve added a Bachelors of Science in Public Health with a focus on Health Promotion & Education to my Nursing major, so I have extra work to do now!  The good part is that all of the Public Health courses are online, so I can work on it while I’m trying to get the stamina to return to Nursing and clinicals.  Please pray that I can get there by spring.  Then I’ll graduate with two degrees and move on to whatever God has out there.  Something I still have yet to learn. 🙂

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

New week, new prayer requests!

Monday’s about to begin, and I’m excited!  Not like I can go much of anywhere or do too many things, but I’m almost two weeks post-op! I am meeting with my surgeon Dr. Fred (his name is hard to pronounce so he told me to call him that) on Wednesday, getting 2 of my stitches out, and finding out what the pathology report revealed.  Whenever they are in your body or remove anything from it, they always send it to the path lab to find out whatever info they can from the samples they have.  They’re examining my entire previous liver, and because of the tumor, we are praying they cannot find any more traces of it.  We’re also praying that there was no cancer in the lymph nodes because that would mean it has probably spread. It’s possible, on the rarer side, but it happens.

First important order of business – if you are getting these updates on FaceBook, PLEASE start commenting here on my regular blog, not on Facebook.  I don’t have time to check it, and honestly, I do not like being on that site.  It’s super easy to leave your comments/ likes here instead.  🙂

Next order of business … visitors!  
YES you may come. Don’t feel like you’re intruding – I love you all and have already enjoyed the people who have come!  Remember, no germs, because I’m immunosuppressed/immunocompromised, but otherwise, text/email/comment and we can plan a day/time.  Just no kids this week – I can’t wait to see my angels, but I’m hoping to see them first after my staples are removed on 9/22 and I’m a little more immune-solid.  🙂

I’m still almost in shock at what has happened in less than 2 weeks – especially when we just got a call and the coordinator, Paula, who said the transplant might not happen till wintertime now just due to my score, size, etc.

Still sore as the incision heals, and I feel like it’s raw since certain areas haven’t scabbed over yet.  Just a gross feeling.  Still losing water (yay!).  Still soaking the whole experience in.  Still so very grateful for all of the love and support from my dear friends and family.

Love you all,

Amanda

Week 2 Begins

Last week….

Monday – MRCP and ultrasound.

Tuesday – Doctor says things are bad.

Wednesday – Too many phone calls

Thursday – Pre-transplant testing and consults

Friday – More of the same

Monday was Memorial Day, and the break was much needed.  After the long weekend, this morning, I met with the hem-onc specialist where he was supposed to prescribe a single dose of radioactive chemotherapy that will later be infused directly into my liver just in case the tumor isn’t benign. Remember, the tumor is in a position where we cannot know if it’s cancerous or benign, so that procedure will ensure if it is cancerous, that the tumor won’t grow. Once a certain size, a tumor can keep you from being on the transplant list.

However, he had a lot of different ideas than all of my surgeons and specialists and needs to do a lot of consulting before everyone decides what needs to be done.  All of this will also need to be gauged along how high on the list I am when I’m officially listed on Friday.  If I’m the top few people on the list, they won’t even worry about trying to shrink the tumor.

After that, we met with Lisa the social worker whom we met Friday, and she wheeled me around the hospital showing my mom and I the Transplant ICU as well as the step-down Transplant unit.  The nurses look great, there’s a lot of support staff, and the ICU is brand, shiny new!  It definitely helped to get an idea of where we will be staying for awhile, and the nurses looked really specialized and competent.

After that, the pre-transplant list rules sent me to the Women’s Clinic for some testing.  I was heartbroken because my doctor’s secretary said she was now only teaching, not practicing, but my nurse practitioner told me she comes in for practice two days a week.  That would have been good to know, oh, maybe a week ago?  Or 3 months ago when I called?  Anyways…

With each appointment or meeting or consult or test, this whole situation is starting to become so real, and I’m anxious just to come out on the other side.

I wanted to publicly thank my mom for driving us to and from the Clinic all of this and last week and for not leaving my side most of last week. I think she’s a little too worried about me, but that comes with being a mom. With a higher power to carry me when I am too weak to walk, I know I’m going to be just fine.

Last night before I went to bed, I asked my mom if she would sing to me when I was hurting and in the ICU.  She used to do that when I was a tiny little girl, and I think the scariest part about all of this is not being on a pediatric unit, not being guaranteed my mom can stay with me for every moment of every day.  No matter how much I’ve been through, I’m not ashamed to be vulnerable and cry for my mom or my stuffed “lovey,” or scream for higher pain meds.  This is going to be hard, but I hope the result is worth it.

Thanks for all of the cards and prayers. The cards are touching my heart, and the prayers are definitely felt.

In over our heads

Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful.  Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out.  My doctor and I have a close relationship, and she fought back tears as my mom broke down.  I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.

Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists.  In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules.  And then I’m done.  Or so they say.

Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI)  The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP.  As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before.  I’ll feel good, have energy, and be able to really live.  Being sick since age 5, I just won’t have any idea what it’s like.  I like the idea of it though!

In between telling our close friends and family, the next few days were just rough.  

Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.

5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult 
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG  (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm:  Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN) 

Friday was a little better…

The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!

I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.

Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.

I’m a little thankful I’m too tired to care much about this.  Otherwise I think I might be a mess.   Plus God is carrying us right now, I can feel it.  Plus this isn’t quite reality yet.

Love to you all. 

The Beginning of the End?

Or perhaps, the end of the beginning?

Today began the beginning of the end, or perhaps the beginning of a new beginning. This week, after an MRCP and ultrasound, we discovered my liver disease (Primary Sclerosing Cholangitis, or PSC) has progressed and a transplant is imminent. I’ve been no stranger to this disease – maintainable with a healthy lifestyle, frequent observation, and medications… treatable only with a transplant. My doctor would always say pediatric cases go downhill unexpectedly and rather quickly. A mysterious tumor has developed on my liver, and it’s in a position where no one can be sure if it’s cancerous or benign.

I will spend most of this week meeting doctors and going through testing, and my doctor expects a deceased-donor transplant in the next 2-3 months. My case has been expedited, and I should have a new liver – and a new life – by the end of summer. In all likelihood, barring organ rejection or complications, I will be able to live a much fuller life after my recovery from this invasive surgery.

As my dad put it, I’ve gone from a marathon to a sprint, and right now I feel a little numb. My parents aren’t dealing very well, and this is going to take a toll on my whole family. My sister surprised me with a charm for my Pandora bracelet, and I know she loves me more than she lets on. I told my cousin, one of my best friends, tonight, and have scheduled meet-ups with my closest friends later this week so I can tell them in person rather than by a text or quick phone call.

My doctor recommended that I put my education on hold until I’ve fully recovered from the surgery, but she expects I will feel better than ever once everything is said and done. I’m excited about that, but so afraid of all of the unknowns. Although I’m no stranger to the hospital, a 2-4 week stay is very intimidating, and I’m not looking forward to having my abdomen sliced completely open vertically and horizontally. I’m really scared of the pain. Also, there are so many “what ifs,” and organ rejection or infection is definitely possible. Thankfully, my doctor said since I’m young, in good shape, and otherwise pretty healthy, I have a better chance of making it through the next few months. As terrible as it seems, an unknown family’s loss will hopefully give me an entire new life, health I’ve never experienced before.

Friends, realize the value of your life and how you can continue to make a difference long after you’re gone. Please go to your BMV or contact me if you’d like to be an organ donor. I can help you make your decision as I’m an advocate for LifeBanc and have been trained as an ambassador. I can assure you that all of the myths are false, and you have the power to change dozens of lives for decades after your death. We never know how many more breaths we’ll breathe, how many more sunrises and sunsets we’ll be here for. Nothing can be taken for granted.

I love each one of you who have taken the time to stop by and check in, and I covet your prayers for my whole family right now. We are especially praying for peace and courage as we finally go through what has been in the waiting for 17 1/2 years now.

Dear Lord,
We come before you tonight and pray for your grace to touch our lives. Lead us through the high waters as you have so many times before. Though I walk through the valley of the shadow of death, please let me fear no evil. I know you are with me, and I know my life is in your strong hands. Please be our strength and our peace as we proceed through this unknown territory. May your will be done in all things, and please give us the courage to continually follow your footsteps in unwavering faith.
Please guide all doctors involved in my case, and let the right liver come to me. Please be with the family who doesn’t know they’re about to lose a loved one in the next few months. I will make sure they know of my gratitude once I’ve received the gift of physical life. Thank you for your gift of eternal life.

Again, please give us the peace that passes understanding as none of this makes sense right now.

We love you, Lord.  Our trust is in you.

Love to you all,
Amanda