Thursday, November 10, 2016

Confession: The Results Are In

The Results are in, and they have absolutely nothing to do with political parties! Can I get an Amen?! Well maybe ... I'm not sure this subject is really that much better. It's been a while since I've checked in to report on my self titled story, Katie's Kronicles, and I'm here today to do just that. If you're new around here, click the link on Katie's Kronicles to catch up ... because there's quite a bit you've missed! And if you already know what's happening and you're looking to read the next chapter, then grab a cup of joe and dive right in. I've got lots of updates and new details to share! Just a heads up before you get down to it...there is A LOT of information here, and I'm trying to keep it as light as possible and explain without confusing you; so if you have questions please know you can always reach out to me, I realize this is vast and complex! And as always, thank you for your support both near and far, it truly means so very much to me.

With that, I never blogged my 3 month follow up results (and there's a reason), so it's probably best we step back a few months and start there. I blogged in May about news we received in April, that I was cancer free! We saw several different doctors, got varying opinions and made the choice to forego post-surgical treatment (i.e. immunotherapy and/or chemo).  We made this decision because our results were so clean and much of the advice we received from oncology was to not subject my body to the side effects (which were TERRIBLE) of the drugs I was eligible for. And moreover we had long discussions about the fact that if the cancer did come back, they would take me off the current drugs I was on and place me on a better drug ... so we made the decision and vowed to only look forward.

Let's start by saying, my 3 month survivorship scans (I will have these at 3&6 month intervals for 2 years) a brain MRI and PET scan (of the rest of my body) were all clear! Praise God! Here's a photo from that day ... our typical waiting room selfie we've taken at nearly every visit.
Ya'll these days are HARD. Anyone who has walked a similar road knows how taxing these days can be. You're poked and proded all morning, coupled with spending too much time in terrifying and loud machines, only to go to a waiting room where you helplessly and anxiously wait to hear the results that could change the rest of your life as you know it (over which you have zero control). I'm not really much of a complainer, but this part of things is downright terrible. The feelings and thoughts that creep into your mind are just awful. But I've gotta tell you something. This guy up there in black and white is as colorful as they come ... and he promised me I would never walk any of it alone. And, I am so grateful for him.

Anyways, sorry got off on a tangent there. We got great news, it was a great day and we were on cloud 100! I should also mention (more for my own memory in years to come), there was also an incredibly annoying "bump" both myself and the surgeons diagnosed on my scar.  It could have possibly been local recurrence of the melanoma ... so after a day of waiting we were back in the hospital waiting for ultrasound. I don't even remember the name of it now, but essentially it was a scar cyst they told me I would likely have for the rest of my life and not to be at all concerned. But go figure, as of this week's scan it has already resolved :) So, three cheers for this visit!

However, here's the caveat to those results and why I never blogged those details. A few weeks following those scans I woke up to a spinning room. A spin so severe I thought I would physically get sick. It totally freaked me out. The spins would come and go (often with head movement) and maintained for a good part of a couple of weeks. I began to tell people about it and everyone played it off as vertigo. I agreed it sounded EXACTLY like vertigo, but with everything that has happened, there was a small piece of me that was terrified. Melanoma plays by no rules - but one of the places it often metastasizes (moves to) is the brain. Shane and I agreed we needed to inform my surgeon and she didn't wait 2 seconds and sent me for a brain MRI the following morning. And guess what ... a 2 millimeter enhancement showed up on my scans.

Now, take a breath, it's not as bad as it sounds. A MRI scans the body in 2D (so think about it like there is a scan from the top down and from one side to the other) - so, for something to prove to actually exist it has to be present in both dimensions. And this enhancement showed up in only one dimension - so this is good news! Additionally, the location of the enhancement (and 2mm is very small by the way) is in a spot that would be very rare for melanoma to be. The neurologists + radiologists (3 of them!) all believe the enhancement to be an enlarged blood vessel and nothing to worry about (Praise God again!). But, they wanted to scan again in 3 months (which was happening anyways) to confirm there was no change or growth to the enhancement. We have to wait that amount of time because you have to give something time to actually change if it is going to (I agree, it was terrifying and felt like forever to wait). While this was great news, it still left a small pit in our stomachs, and I elected to withhold the news until we knew more.

That being said, let's speed up to this past weekend and our second round of survivorship scans. I've said it before and I'll say it again: I am beyond thankful for a family that has supported be through this journey. I simply cannot imagine walking this walk alone. I consider myself a strong gal, but I'd be nothing without my support system. My parents came into town to help with the kiddos so Shane and I could breathe a little easier knowing they were in good hands. We woke up early Sunday morning and headed to the hospital where I began my series of scans. First up was my brain MRI followed by a CT scan of the abdomen and pelvis. After a long day at the hospital my peoples were ready to take on the day with me and be an excellent distraction for the nerves we were fighting until we'd hear the news the following day. We spent a wonderful fall day exploring Franklin, TN and all was right with the world for a brief while.
We said our prayers, headed to bed ... and woke up bright and early once again to head back to the hospital. First up cancer clinic lab ... blood draws and the whole ordeal to get vitals, liver enzyme counts, white blood cell counts, the works. Next up, surgical oncology, and the results. She walked in with a smile on her face, a deep breath and a "from what we see the preliminary results are clear" ... cue tears and deep breaths. Followed by, "unfortunately neither of your readings have been submitted and we'll have to call you on the final report". So we could breathe, but not as easy as we would have liked. After surgical onc ... we headed down the hall to see medical oncology, and more of the same story. It was all in all an upbeat visit, but we left feeling a small pang of fear. But we continued to smile, to pray, and cling to our faith and each other. And in good tradition, we took another waiting room selfie ... because it's what we do.
After those visits we snagged lunch, headed to the Vanderbilt 100 Oaks location and waited again to see dermatology ... skin cancer ain't a joke y'all ~ WEAR YOUR SUNSCREEN! I now see the dermatologist every 3 months as well, and have about 2-3 spots biopsied at nearly every visit. And this visit was no different, three new spots sent for testing. While we were there we received the call with results from both scans ...

The brain MRI still showed my 2mm enhancement, but there was no change since our last scan and the neurologists still feel as though this is a blood vessel. Because the enhancement is proving to be stable, my medical team has agreed to have my brain MRI's decreased in volume and now simply do annual scans. Additionally, they urge to rest easy and feel confident there are no signs of metastatic disease in the brain.

The CT scan however, showed us some new detection that rattled me (new findings in the liver - another common place for melanoma to metastasize). The CT scan, with contrast, takes three images: one at the beginning when the contrast is entering into the organ(s), another when it is inside the organ(s), and lastly when it is leaving the organ(s). The last image showed variation compared to my previous CT scan and the radiologist saw two nodules (which she believed to be arterial enhancement), but given my history she had low suspicion this could be metastatic disease in the liver. Given that report, my doctors opted to take the tests one step further and ordered to get a MRI of the abdomen, so we could get better imaging to be able to confirm or deny the findings.

They worked fast, and I was scheduled for an abdominal MRI Tuesday morning at 8am. The rest of the day was a blur. We were exhausted, our nerves were shot, and waiting on another round of results while manning a threenager and a nearly walking toddler was brutal! But the phone rang at 5:20pm and the results were in. And we were able to breathe. Again, the MRI showed two areas of the liver they were reviewing. One area they are nearly certain was simply arterial enhancement (similar to that in my brain) and basically means my blood flow is more rapid than what's considered normal.  The second area is what is called "focal nodular hyperplasia (FNH)" and essentially means the same as the first, except they are creating a small benign tumor of sorts.  It's an island of blood vessels and a build up or growth of normal liver tissue. The radiologist does not believe they are associated to the cancer or a melanoma metastasis in anyway. But, they are cause for slight concern and they want to (obviously) continue to monitor them because they can continue to grow and cause bleeding or pain.

Because of this, they will add an abdominal MRI to my round of 6 month scans for the remaining years of my survivorship scanning program to keep an eye on things and ensure their readings are correct. A further test would be a biopsy of the area, however if this is a true FNH biopsying the area could do more harm than good, because it could cause internal bleeding. The doctors and I talked a lot about the blessing and the curse of being scanned so often, and the effects of amazing imaging. My dermatologist mentioned to me, that I was frequently talked about at tumor board, and that everyone is working my case with a fine toothed comb because of the complexity (pregnancy, age, etc).  Therefore, they are pointing out anything and everything that normally they may just side note for another patient.

So, all of that to say, we are breathing easier, but not easy. We trust our team of doctors. We feel as though we are in great hands. I know for certain they would start me on drugs, or biopsy areas the moment they felt it was necessary. But, I'd be lying if I told you there wasn't a small piece of me that felt completely terrified hearing "We've now found something in your brain, and two spots in your liver we never saw before, but don't worry it's all totally not a big deal." Uhm!?!? That seems like a big deal to me! So, per usual I requested a second opinion :)

And don't get me wrong, it's a big deal to them too. But, they deal with this everyday, they see this stuff everyday. They went to school to learn the difference between a benign artery enhancement and something that could be deadly. I chose them to be my team. I've talked a big game about having faith. And trusting none of my journey has come by surprise to The Big Man Upstairs. He has been with me from the beginning, and again it is time to have faith. It's in times like these I always wish so desperately I was good with words ... but reality is ... I'm just not. So I'm going to quote my Aunt Toby, my spiritual rock and one of my ultimate uplifters from the very beginning, and focus on His truth guided by her wisdom. Without some of her conversations my darkest days would have been a heck of a lot darker...
Anytime one hears "tumor" it brings concern. And just the fact it's there is troublesome. But, the key is they did NOT say cancer. They did not say "do surgery now!" They are aware of it, and they have a plan. Tumors can occur from fluid build up and other things. Tumors can be removed and dissipate on their own, by medicines and by God. 
Have you had peace of mind completely since this has begun?! No! Would any of us?! Seasons of reprieve ... yes ... peace ... yes. But fear manages to creep in. This is the fight of the spirit as well as a very intense focus of our being on trusting and having faith in God. AND listening to the medical field ... trusting their expertise BUT praying, believing God for healing. Whether all done in miracle form by God or through medicine and/or surgery. Take what they say ... prayerfully give it all to God, trusting he is working, guiding you each step of the way.
Even Jesus suffered, stressed, questioned before he began his walk to the cross. Scripture says he went to the mountains to pray the night before he was arrested and sweat drops of blood as he asked his Father God to take this cup from him ... if possible.
I know God is with you, I know His word is alive and powerful to heal. I know your life is in His hands. What that looks like only He knows. But He means us good, not bad. It's the journey that is hard to pinpoint.
Question your doctors, do your own research, get second opinions if necessary, pray, trust God, claim His promises in scripture. When fear or worry start to overwhelm you, get in The Word. Spend time alone with God. Faith comes by hearing ... hearing by The Word of God.  
And that my friends is where we are today. We knew this road was going to be long. We knew this road had the potential to be hard. We knew we would question. They weren't perfect scans. There is more than one element that is in question and more than one element that brings an abundance of uneasiness. And here we are, on the road, hitting some bumps, questioning.  But as I said in the beginning, I'll continue to take off the gloves if I have to. Has it rattled us? Yes. Will fear win? No! It is up to me to focus on finding the good. To continually choose to walk by faith and not by sight. And that is what we plan to do.
Quoting my dad, I challenge myself and anyone reading ... "We've been taught to pray and the good Lord promised us and our children long, productive and healthy lives ... Not perfect by any stretch ... Never lose your faith and believe in God's will. He has a perfect plan for you ... GREAT plans for you ... go live them!"

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  1. You've had a crazy few months!! So glad that nothing major has shown up and I pray that your next scans continue the same pattern! As someone who has had melanoma I understand the anxiety of each and every visit!!

    1. Thank you so much Emily! Praying for you too!!

  2. What a rollercoaster! So glad to hear that this round was another good one and hope that it continues to be so going forward!

    1. Yes ma'am! H-O-P-E: Having Only Positive Expectations!


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