Wednesday, April 20, 2016

Time to Take the Gloves Off

Hump Day! We've made it halfway through the week. I had plans to pop in today and tell you all about the fun stuff that's been happening while I've been in recovery.  And adorn the blog with all things cute and add funny pictures from Bennett's Family Picnic day at school to ice cream dates, and even some hilarious updates about how I'm handling crutches (ahem, they were so much cooler when someone came to school with them when I was 12) and my dad's attempt at making Lainey a bottle. But, pathology is in and I think it's best to just get everything out there and share with everyone what's going on.

Meanwhile since I'm laid up anyways, I'm going to be doing a little bit of back-end work to create a page directly dedicated to this whole medical debacle. So, for those family and friends that are interested in specific updates, but aren't necessarily all things blog lover. They can easily find them without having to read about potty training my little guy or the most adorable top I just ordered online (although I cannot for the life of me imagine why they wouldn't want to know that too?!?! ha!). The updates and posts will still appear here on your live feed too, so you won't miss anything!

So, for anyone new to class here's what you've missed, I was Diagnosed with Melanoma last month, and I had surgery to figure out what stage the cancer was at last Tuesday and recapped that here. And now we have reached the surgical staging portion of this process and that's what I'm here to tell you about today.


Okay, so my surgery was Tuesday, April 12th and the doc said pathology would be in - in about five days.  During surgery they took three lymph nodes and pathology slices them into incredibly tiny pieces and injects a dye into them that reacts only to melanoma. So it can take a while for them to review all of the pieces and let the dye get to work.  So, full report was in last night, reviewed today and she called me around 11:30 this afternoon. Some good news, some bad. The good news - from the portion of the leg that was removed, there is no cancer left and we got clean margins. Woohoo! The bad news - it has spread.

They took three lymph nodes from the previous surgery, and in testing those three nodes they found traces of the melanoma in one of them. There was about a 6mm amount or about a half a centimeter in the node. This means to date, my surgical staging of the cancer is Melanoma - Stage III
  • Stage I - a thin melanoma in the skin
  • Stage II - a thick melanoma in the skin
  • Stage III - melanoma in the skin and it has spread to the lymph nodes
  • Stage IV - melanoma in the skin that has spread to the lymph nodes and other places in the body 
Now, we're onto the next round of testing to determine what else we are up against. And our battle continues! So, from here we've got a few more hurdles to jump before we have a more clear picture. 

First, and moving quickly, I will face a round of scans that will show us if the cancer has spread and is metastasizing (developing malignant growths in places distant from the original cancer site) elsewhere in my body. I will go in Friday afternoon for a PET SCAN in which I will get an IV of fluid with a radioactive tracer and a glucose solution that the body will absorb. During the scan if the body has highly concentrated spots of the solution on the scan - it will light up, and that is a good indication the cancer has spread there. The scan is about 2 hours and I can't eat or drink 6 hours before the scan (so hungry- wahh!). It will scan the entire body (minus the brain) and give us a good indication. 

After that, I will walk my hungry little booty to snag a quick bite and then I'm off to cardiac MRI to get a Brain MRI. The nurse said, and I quote "this is the mac daddy of all machines" so I'm expecting this thing to basically be like the coolest spaceship I've ever seen (and that's coming from a gal that spent a summer at space camp, so I'm well versed in machinery, ha!). Here I will get a pigmented IV that will help detect anything in the brain. This procedure is also about 1-2 hours. After both scans Friday I will get to come home and have a happy weekend with the littles. 

Then, Monday morning I head back to the clinic for my regularly scheduled post-op visit with my doc. Before the visit they will be doing a full write up and all lab work, then I will head to her office and get my stitches removed and talk about the recovery from the first part of surgery. After that portion of the appointment, we will review the results of my PET and Brain MRI scans from Friday and finalize our next surgery date to remove the remaining nodes in my groin. 

There is a possibility the surgery could be as early as next Tuesday, but most likely will be the Tuesday after that. As I mentioned before, they previously took 3 sentinel nodes to biopsy in the surgery last week to determine if it it had spread, and as we've found out .. it has spread to one of the three nodes they took. So, routine practice is to remove the rest of the nodes from groin (which is the nearest place to the cancer site on the leg) and that will be what is taking place during this second surgery. They will go in through the same incision they originally went made last week and will remove the existing scar tissue.  Unfortunately, the incision will be larger than the original and there are roughly 10-15 lymph nodes in your groin and they're all coming out. Bye see you laterrrr!

This surgery will take about 3-4 hours and the recovery from this one will be a little more extensive as my body learns to reroute the lymphatic system.  Like last time, we'll have the results of those lymph nodes in about 5 days and my doctor will review the results with my oncology team and we will determine with those findings, plus the results of my scans what we (if anything) need to do. If further treatment is needed, the typical treatment for melanoma is immunotherapy which is a form of chemotherapy. It basically puts your immune system on steroids to help your own body attack the disease. 

And that my friends, from a very green patient in this category is my best regurgitation of what I have been told to date. And an honest assessment of how I'm doing ... is a complete roller coaster. Seriously, if I write this post in an hour you may get entirely different text. 

But, truthfully I am in good spirits. Did I want the phone call to be great news and the doctor tell me it hadn't spread and we got it all? Of course I did! I wanted that most of all. But, did I know this could be a possible outcome and I was guarding my heart that I may have to deal with this too? Yes, I was.

So here we are. We've jumped the first two hurdles of diagnosis and the surgical staging surgery and now we're rounding the corner to the next hurdle of more scans and another surgery. I could keep writing (and I will later) about how I'm handling everything else, but right now I need to focus on one thing at a time. I can tell you I'm struggling with the mommy and family piece of it all.  Having to take a back seat to the fun adventures and simple day to day with my kiddos and normal routines are the parts that are hurting my heart most. But we can chat more about that later. 

Bottom line, we played nice and hoped it would bow down and not spread, but it has. Therefore, we've got no other option than to take the gloves off and fight dirty. And I'm fully prepared to do just that. The Lord paved this road for me, and as my dad says "He helps those who help themselves" and I'm ready to walk it. And keep walking it for a very long time!

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  1. Dear Katie, Shane and sweet little family, "May our Lord Jesus Christ Himself and God our Father, who loved us and by His grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word." 2 Thessalonians 2:16-17 Lifting you and your family up in prayer for all things good! Your faith, strength and positive attitude along with wonderful family and friends and prayer warriors will get you through this difficult time. Keep smiling that beautiful smile! "Let your light shine before men, that they may see your good works, and glorify your Father which is in heaven." Matthew 5:16 Love - Alan and Angie and family

    1. Thank you all so much for thinking of us! We're smiling through it all :) it's much better that way!

  2. Katie, I ran across your blog a couple months back and it is so adorable. A friend was telling me about your most recent posts and I had to reach out to you. I hope others read your blog as well because it's truly inspiring, you are one strong lady and you will get through this. My father was diagnosed when we were in high school with pancreatic stage 4 cancer and is still here with us. Even the "bad news" can change to good at any time! I truly believe his fight is what saved him. Never give up hope and don't let anything get you down! I'm keeping you in my prayers. -Lauren (Hughes) Koetter

    1. Amen sister! The bad news, turned good today :) Good to hear from you, and prayers to your family as well.

  3. Katie, You are a Strong Beautiful Young Lady and with the positive strength you have, will get past this. You will be there to watch both Bennett and Lainey grow up. You and Shane will grow old together. Stay Strong Katie and believe. Prayers are with you and your family!

    Lynn Treece (Neace Lukens)

    1. Thank you so much Lynn! I believe all of those things with my whole heart. We will come out on the other side victorious!

  4. Thinking about you SO much Katie, and I too believe wholeheartedly in the power of prayer! You are not along and thank you for showing us how to be strong in difficult times!

    Cara Wrona


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