Friday, May 20, 2016

Conquering Kings + Enjoying His Gifts

The weekend has arrived. I was drinking my coffee and received a text from my girlfriend "Good grief, you haven't blogged since Mother's Day!" I've had so many people reach out for updates and remind me that my online presence is lacking, and outside of the health stuff I've got so much family and life business to catch y'all up on.

To be honest, I've opened up this bloggy blog probably a grand total of nearly 100 times over the last two weeks. And, every time I start typing I've either got a massive case of writers block or the words I normally write have felt so insignificant relative to what is really on my heart. I was talking to Shane about it, and I think I've realized it's because it seems from the beginning, I've been talking so much that I haven't really taken a lot of time to listen. And simply put, I needed to take some time to listen. I needed some time to process. I needed some time to reaffirm what I had been saying. I needed some time to simply put it all on hold and really strategize with myself. I needed time to pray. And bottom line, I needed more time to take it all in and figure it out.
The last two nights I've slowly found my voice and it's brought me here today to share.  I've still got a lot of answers to uncover, and there is still a bumpy unknown road ahead. But, I'm ready to share a little bit and get back to cute pictures of my kiddos soon. The first strength my voice needed I found in the Old Testament Tuesday night, as I was reading Joshua I was reminded that Joshua drove out 31 kings and conquered nations just as God had promised he would. I was able to parallel that story and see that I too have conquered my own "kings" and super power nations. Ya'll after these surgeries, I have clean margins from the primary site on the back of my thigh, the positive sentinel node has been removed and during the second surgery 22 more lymph nodes were removed and they all were negative which means I also have clean margins in the local node basin, additionally my PET scan and Brain MRI are all normal … and ya'll that means doctors are able to look at me and say from what we are able to see,
I AM CANCER FREE!
There is no visible disease left in my body and I've got the scars to prove it <insert squinty eyed tongue sticking out emoji here>!
Shout out to Karlie, for this incredible insert in a thinking of you card. Makes me laugh hysterically.

In that same breath, MaKenzie called me last night and we talked for well over two hours, yes you read that right, two hours ... we're cousin sisters remember AND we live far away, we have lots to share. In speaking with her I continued to find my voice. She has a way to make me feel stronger than I really am. And whether it's real or just sister induced, she was hurting, because I'm hurting and I don't want that for anyone. So it reminded me - SHARE THE GOOD NEWS! Remind everyone there is a reason to celebrate, regardless of whatever is ahead. Life is happening right now, and it's moving on regardless of what is happening behind the closed doors at my house. So, it's time to come out from the curtain and get back to it. Here's an update on where we currently are ...

Recovery from surgery #2 took longer than we anticipated, and we've had some slight complications that's made "getting back to it" a bit of a struggle. But, we're starting to see the light at the end of the tunnel and I'm limping as fast as I can to get there!
  • Complication number one came the day before the second surgery. I was scheduled to have the stitches removed from the first surgery and the nurse was told to apply steri strips after the 25 (ouch) stitches were removed from the back of my thigh. Shane and I were jabbering and not paying attention when we realized the nurse applied mastisol to my leg (an adhesive often used in conjunction with steri strips). PANIC!!! We uncovered, the very hard way, that I am SO RIDICULOUSLY allergic to this stuff after my c-section with Bennett. The nurse tried to remove as much of the adhesive as she could, but unfortunately a few days later we encountered a similar reaction as we had faced a few years ago. The reaction was so severe that it began to infect the incision from the first surgery.  So I was put on some strong antibiotics and the ability to move my leg became a little more challenging. We battled the infection and the allergic reaction, and about 3 weeks later it's finally starting to look somewhat back to normal and we're feeling pretty good about that!
  • Complication number two, came after the last surgery when I mentioned a drain had been inserted in my thigh to help alleviate the post surgery fluid. We'd hoped it would get removed after two weeks, but my output has yet to drop below the desired number so I'm still rocking my fancy grenade. However, my doctor won't leave it in longer than 4 weeks due to risk of infection so I have an appointment Monday to have it removed. While I'm praying that the output will be down and it will be ready to come out, I couldn't be more happy to say adios to this little contraption.
  • Complication number three was diagnosed two weeks post-op, I was having some pain in my calf muscle when I would walk. I was attributing it to simply being on my feet more after surgery and strengthening my muscles. But, when I mentioned it to my doctor and she looked at the amount of swelling she sent me immediately to ultrasound. And I was quickly diagnosed with an Acute DVT blood clot in my femoral artery. Boo! Hiss! So, I was placed on blood thinner injections (I give to myself in the stomach) and will remain on these for roughly three months and we will re-scan to see if the clot has dissolved. This past weekend I was having some pain in my chest and we were concerned perhaps the clot had dislodged and moved to my lungs, so I was sent to have a CT scan to check for a pulmonary embolism. But, happy news - I DID NOT! So, we'll continue to take it easy and remain on the thinner.
I say all of this as a reminder to myself, that we continue to overcome obstacles placed in front of us! They are scary. They are bumps in the road we can't expect. But, we are keeping our eyes on Him and trusting that none of this is coming to Him as a surprise. We are in a tight spot, but He has either placed us here or allowed us to be here and we're trusting that although we may not understand why, there is a reason. And furthermore, did I mention doctors have said "I'm Cancer FREE?!" because that's a gift He has given us and we're not taking it lightly. These littles and their smiles are an every present reminder of His magical gift every day.
"God saved you by his grace when you believed. And you can't take credit for this; it is a gift from God." Eph 2:8

Now, anyone who has ever been touched by the dirty C-word knows even though they can tell you "you're cancer free" you're technically not for five years. The recurrence is most likely to recur in the first two years, and after that the chance of it recurring goes down more every year and a lot more after five years. So, as I mentioned we still have a long road ahead.

But, for now we are faced with a very tough decision and we're trying as hard as we possibly can to make the right choice. We've met with medical oncology and I am classified as Stage 3A - which essentially means "it's pretty bad, but not bad enough". And therefore, my options for drugs are limited (because other drugs that are having success are still in clinical trial phases and only available to stage 4 patients). Therefore the two drugs available to me in the form of immunotherapy (a type of systemic chemo) are Interferon and Ipilimumab.  I would take whichever I choose for about 3 months intravenously and then maintenance treatments for the remainder of the year. The alternative option is observation. There is A LOT to say about both options, and we're getting a second and perhaps a third opinion before we decide.  For what it's worth, our Vandy oncologist's opinion was observation.

From a very surface level explanation here are some things we're studying up on: We need to ensure we have full understanding of the drugs, their side effects and possible complications. We want to be made aware of any drugs that are still in clinical trial that I may be available for. We want to understand our chances of recurrence of the disease, and the effectiveness of the drug options I am eligible for.  We want to talk a little more and understand more about any microscopic cells left in the leg, or those that could be in transit elsewhere in my body. We want to read about cancer killers in life and ways to starve cells if they do remain in the body. We want to meet with more than one doctor and hear varying opinions so we can educate ourselves and arm ourselves with the most knowledge. You have to make a decision of whether or not you are going to undergo treatment in a 12 week time frame from your last surgery; so we have about 9 weeks remaining to decide if we will take a drug or simply observe.

I'll be sure to update ya'll intermittently as new developments arise, but for now ... I'm going to get back to regularly scheduled programming on this little space...Because Shane celebrated his birthday and I took pictures of Bennett on his last day of Two Day Twos and I've yet to update you on that (GASP!). It's going to be a long process, and I love having my support team along for the ride. But I want us to enjoy the ride and and sing our favorite songs while we're in the car. Because a road trip with bad music is just the worst.
So, that's where we are today. We're dancing. We're singing. We're celebrating. We're working every day to learn how to walk again without a limp. We're meeting with more doctors to discuss and understand how to deal with lifelong issues like lymphedema. We're meeting with doctors again and continuing to do so nearly every three months to monitor, scan and observe for a few years. We're battling this blood clot and sending it dissolving vibes. We're scared some days and filled with comfort the very next. We're watching our little ones continue to thrive and grow. We're reminding one another what marriage really means, and looking forward to winning the generations dance at our grandchildren's weddings someday. We're doing our best to make each other laugh, even if that means sticking out our tongues when we really want to cry. And most of all we're simply working to enjoy this time and make the most of this recovery period. Meanwhile, we're continuing to look for guidance and direction to come to a decision we feel confident about. In a nut shell, we're living life. Not that we needed a reminder, but it's been a good one to take advantage of the time we have. And as we've said from the beginning we have every intention to continue to do this for a very long time.

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9 comments:

  1. So happy for you and your family!! Such great news! Good luck going forward.

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  2. I love your voice. You are one of the lucky ones, true beauty deep on the inside as well as the out. Proud to be your sister. *~Noellie

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  3. I'm so happy to hear a great update! I know we've only met a few times at the mom's group but I have been thinking of you and praying for you ever since reading what you are going through. :) You are so positive through it all which I really admire! I will continue to keep you in my thoughts and prayers! -Cara Griffin

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    1. Thank you Cara!! Can't wait to see that sweet new baby soon, good luck during the home stretch :)

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  4. Katie, so glad to hear the good and positive news. We are thinking and praying for you and your wonderful family daily. God is good

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  5. Katie- I have been reading your blogs of not only your beautiful family but your diagnosis. So happy to hear the good news but also your positive attitude and out look on life! Thinking happy thoughts for your future recovery.
    Alex

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  6. katie I am just getting caught up on all that you have been through! I was diagnosed with melanoma in 2009. While mine was not as severe as yours I understand all that you've been through. Was going to try and email you but couldn't find your email on your blog. Your attitude is amazing and the positive outlook even better! Will continue to pray for you on this journey!!

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I love hearing from you! Your comments make my day - and I read each and every one of them. I'd love to be able to respond so make sure your email address is set up with your profile ~