Julie Steele

First post: Feb 3, 2019 Latest post: Nov 29, 2019
Who goes in to the doctor because their belly button hurts? I mean, how silly does that sound?! "Um yes, excuse me doctor, I know you have a  bunch of people to see today, but, well, my belly button has been hurting and I was wondering if you could take a look at it?"  That's pretty much how it all started.  It was early 2018 when a  doctor took a look at me said I had a hernia and my belly in general looked pretty swollen, so I should go take some MiraLax and eat a more plant based diet. What I heard was, "you're full of crap...go poop more, and eat more salads".  I mean, it wasn't what was really going on, but put like that it does make me laugh. And for the record, I'm actually almost starting to like salads.

Fast forward April Fool's day, the day of  the surgery.  Easy no-big-deal surgery.  When the surgeon was doing the hernia repair though something didn't look quite right, so she did an extra incision, one she didn't normally do but thank God she did.  At this point a bunch of fluid gushed out over the table and onto the floor. Just in case you were wondering, this isn't supposed to happen. She sent some off for testing and thus began the journey of figuring out what was going on.

This was probably the hardest part of my journey;  Learning for the first time that I am not the healthy person I thought I was, life is going to become different than I've known it, and that I was facing an unknown opponent.  And this faceless opponent was scary.  We were able to quickly rule out a lot of things; malignant ascites, heart failure,  pancreatitis, ovarian, uterine and breast cancer just to name a few.  I mean, I had never heard the word ascites before but if you Google it you learn that average life expectancy of malignant ascites is 1 to 4 MONTHS.  So it was a huge relief as test results started coming back and some of the really scary possibilities were ruled out. Liver issues were all that remained and so the doctor ordered a lot of obscure blood test to try and determine the cause.  It was almost 6 weeks from the day we found the ascites when the doctor called and said, "I think you have Budd Chiari  Syndrome (BCS), a very rare (1 in a million!) thing. There are things blocking  the hepatic veins (veins leaving the liver and going in to the heart) which is causing a big strain on your liver - hence the ascites.  Go check yourself in to the hospital so we can run more tests."

This doctor was very thorough.  He found something that is obscure and uncommon and he kept searching until he found the cause for it.  Go Dr. Tang! So now we knew that I have BCS, caused by a blood mutation. Yup, that's right, not only am I now "one in a million" but I'm a mutant.  This means I can join the X-men now, right? I'd love to be able to teleport or control the weather or something but instead my superpower, sorry  - my "mutation", is that my body makes too many platelets and red blood cells. Anyway, at least we had a name now for what we were facing (BCS), we knew what the cause was (myeloproliferative neoplasms) and we had a game plan. We were going to do stuff to manage the BCS, and I started taking blood thinners and a daily oral chemo pill for the blood mutation. Despite it all things were actually starting to feel less scary now.

It was the day of Justin's birthday party, he turned 11, when I got the call from my new liver specialist.  A tumor we had seen in previous MRI's had turned to HCC cancer.  It was a hard party to get through.  It felt totally surreal. I thought things were moving pretty fast before, but from there things really picked up pace.  The doctor said the BCS caused chirrosis which then caused cancer.  Talk about chain reactions! And the only way to get rid of liver cancer is with transplant, something we had previously assumed was several years down the road.  So the race to get on the list with UNOS began.  

Thank goodness I don't have a job, because I was up in LA a ton.  I did more tests than I ever thought possible. Some of the tests were a piece of cake and others had me crying, shaking, and realizing that "this might sting a little" is used way too liberally.  It was not for the faint of heart. We also did the first round of chemo (TACE) at that time to try and shrink the size of the tumor. It's not like normal chemo -  I won't lose my hair -  but it was not fun at all. It ended up, however, being very successful and definitely worth it.

Shortly after this, I flew to the Mayo Clinic in Jacksonville, FL with my mom so that I could get the final approval  to be on the transplant list and have Mayo be my hospital.  Kaiser recommended we go there instead of waiting here for transplant at UCLA because the wait time is just so much shorter.  This cancer is aggressive and a shorter wait time is definitely better! We were there for 10 days. More tests. A lot of learning. And then we got to come home and wait. You see, no matter where I get transplanted, UNOS makes you wait a minimum of 6 months. Don't ask me why. During this time I just have to do MRI's, show that I'm following doctors orders, and prove that my cancer hasn't grown or spread past the given limits.  It's been a wonderful lull between a lot of crazy.

I feel better than I did at the start of 2018 when this all began, and I've had a lot of sweet time with my family and friends. A lot of times I still have a hard time believing that I'm sick.  With the medications that I'm on, I feel pretty much like my normal self.  I eat a little different, I definitely rest more, and I stopped working out (doctor's orders - no joke!) but I get to do all the day to day stuff I want to.  I am so glad I've been able to be at home and enjoy the time.

Soon my mom and I will go back to Florida.  She will be my full time care giver after transplant.  I don't know how long we will have to wait for a match to become available and I don't know how long it'll take to become stable enough to come back home, but the doctor said to expect 4-6 months.  Then I will have another "new normal" to get used to. It really has been a crazy time.  Not something I would ask for in a million years, but something that I have seen a lot of good come from nevertheless.  I feel closer to God than ever (I cannot emphasize the huge ways I've seen God throughout this enough!) and I don't take my time for granted.  It has really helped with priorities, that's for sure!

I tried to keep this superhero backstory short.  (I don't think I succeeded!) but at least now, if you are actually still reading this, you know a little more about where I've been and where I'm going on this journey.

I will try and do updates on how you can pray, because I really think that is the most helpful thing you can be doing for me and my family.  I really should just write down a list of all the answers to prayers that we have seen this last year because it's astounding, but I don't know if I'm up for that quite yet! (novice "journaler" here) I will probably be terrible about responding to posts, but I want to say that if this Caring Bridge experience is anything like the texts I've received, your encouraging words and verses really mean the world to me.  Thank you my prayer warrior friends!

Choosing Joy,

"But God will use this mess for good" - Max Lucado
"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Julie’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register