Scans and the plan

What a week! Scott and I started the week out with the Great Darke Co. Fair, which is the only way to start off a week. If you’ve never been, you need to find a way to go. It’s in his hometown of Greenville, OH and it’s nothing short of wonderful. I got pushed in a wheelchair along with all the old ladies, and got to eat all the great fair food.

Tuesday rolled around and that meant scans. I got a CT scan, and we found out yesterday at our chemo appointment that the tumor in my abdomen has grown more than they’d like to see, but the one on my lung has stayed the same, which is good. We were expecting this, although I have been feeling “good” lately so we wouldn’t have been surprised if there were no growth either. I say “good” because I have been feeling “good” lately, but my good is not the same as your average person. My good usually means I still move super slowly and can’t walk very far without tuckering out, along with stomach discomfort.

So, yesterday we did not get our regularly planned chemo, but moved on to the next treatment plan, which involves immunotherapy. So we will get Pembrolizumab IV once every 21 days, and I believe that will be an overnight inpatient in order to get it approved by insurance. This is an immunotherapy used a lot in melanoma and lung cancers. There are a few hurdles to why we don’t feel great about this drug in my case, but it has been used in random tumors before and done really well. It’s never been tested with my type of tumor, so I’m hoping mine will be one it works well with. So a prayer request would be that my body would find a reason for this drug to target my cancer cells. The second immunotherapy med I will get, we started yesterday. That is Azacitidine, which is a subQ injection in the skin for 7 days then off for 28 days. This drug will wake up cells my body hasn’t used since it was an embryo  in hopes that my body will recognize my tumor as foreign. The Azacitidine hopefully will act as an enhancer to the Pembrolizumab. So we will give this combo a few months to do it’s thing and then scan to see what is happening. The goal of these meds isn’t for the tumor to stay the same, but to shrink. So pray for that.

We also found out yesterday that when my short term disability turns into long-term, I lose my status as employee, which means I lose my insurance. This is a BIG DEAL. That switch happens Sept 29. We just finished our out of pocket costs for this cycle (july-june), so it’s especially sad to have to figure out what to do about insurance. We’re looking into everything. I would even do paperwork at home to stay an employee if they’d let me. I don’t know what we’ll do and I’m pretty sure Scott is stressed, but I do know that God will take care of it. He always does. So I’m resting in that.

The really great thing about yesterday is after such a crazy day full of stressful news, I got to go straight to a fancy spa with a sweet co-worker to get fancy agave nectar pedicures. One of the care managers at work gave my co-worker a gift card for us two to go get pampered, and it was absolutely the most perfect thing that could have happened. I haven’t had a pedicure in 15 years I’m pretty sure, and let me tell you, I love them. This place (The Woodhouse Day Spa in Kenwood), was so fancy. I walked in and they offered me a drink and took me to a relaxation room while I waited for Annie. Then we went back to the pedicure room where I got to sit in a fancy massage chair with warm things around my neck and my feet in warm water. I wasn’t even too ticklish! Oh man. It was perfection. Thank you so so so much for that amazing generosity (you know who you are):)

In other news, girl trip to Harry Potter world is up and running smoothly for now. We have 15 girls going, so watch out, Orlando. Please be praying that I’ll still feel good when that rolls around at the end of September.

Scott and I are taking a day at a time over here, so we’re doing pretty good. God’s word keeps proving to be exactly what I need to hear when I need to hear it. It’s funny, Scott can tell the days I spend time with Jesus in the morning versus the days I don’t (embarrassed money emoji would go here). This morning was really sweet when I was reading 2 Corinthians. In 1:9-10 it says, “Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.” The paragraph right before it was all about God’s comfort for us in our trials. The word of God is literally alive and active, and I am so thankful for that. He always gives me what I need when I show up to listen.

Thats about it over here. So to recap, we need prayer that these new immunotherapy drugs would work against this tumor, as well as for insurance to work out somehow (preferably without Scott having to get a job that won’t allow him to be with me). And as always for healing. Whether that be through these drugs or straight up God, we’ll take whatever. But mostly that our eyes would be set on Jesus. We love you all! Thanks for following along and for praying.

LONG update

I am the worst updater! I apologize. I can’t tell you how many times I thought about sitting down to write a blog, and just kept putting it aside. So much since I last checked in!

Treatment wise, we’re still doing the weekly Doxil (IV chemo in the hospital) and now the oral Pazopanib daily. We will be doing scans here soon to check on how effective this is. If it is effective (slowing the growth or shrinking it), we’ll continue on these. If it is not effective, we will move to a couple immune therapy drugs (if insurance will allow it in my case). So that will be a big prayer request should we need to move to the next option. These drugs aren’t typically used in cases like mine, so it may be a fight to get them. Still feeling good with the weekly chemo, which is great.

July has been CRAZY! We’ve been to 4 states, traveling every weekend. We are excited to stay home for a bit this month. The first weekend of July we went to Philadelphia for a wedding. Our YL teammates daughter got married, and they rented out a B&B (it was to die for). They gave us what I’m pretty sure was the master bedroom there (way too sweet of them), and just let us hang out and enjoy for a few days. It was so perfect. We relaxed a bit with our sweet friends there for a few days, and on the last day, when we all left, we headed to New Jersey with our friends the Boyce’s and the Bohl’s. We went to a sweet little town that I lived in during 7th grade. I grew up in NJ basically from 1989-1999, so the one year living in this town doesn’t compare with the almost 10 years of north Jersey, but if you’ve ever been to Spring Lake, you’d understand why we chose it. It is right on the shore, and full of gorgeous giant homes, a sweet little main street with candy shops and pizzerias. Turns out it was $10 per person to go on the beach (?!), but we hung out on the boardwalk and walked around. I brought them for slices of pizza and then italian ice in a neighboring town before we headed back to PA.

The next 2 weekends were traveling to and from YL camp. My favorite week of the year. Scott and I drove behind the bus so I could recline and sleep on the way there and back. In short, it was an amazing week. I had to stay in a room separate from the hs girls, and had a little golf cart to get around quickly, so it looked a little different than other years leading, but was still great. I essentially went for one girl going, which made it really relaxing and awesome. We had the sweetest cabin of girls ever, who wanted to spend all their free time together and threw gummy bears up on the ceiling until they  stuck. Love them. We got to dive into who Jesus is, and what he offers us. We got to have intentional and deep conversation every day with our high school friends. Which is the best thing in the world if you ask me. We got to see some sweet friends walk over from death to life, and I just felt so thankful to be allowed to be a part of this amazing thing God is doing in hearts.

This past weekend we went to Houston TX for a consult with docs at MD Anderson. We had to spend thousands of dollars to essentially talk to a doctor for 30 minutes, and while that is frustrating, it’s good we went and had that conversation. Texas is HOT. I will not ever live there. I don’t know how anyone does. Scott and I spent a lot of time napping in our air conditioned hotel room. The first day there was just travel, the second day we waited 3 hours to see a doctor for 5 minutes, and the third day we finally had a helpful convo with the doc. So we reported back to our doctor, and the next day we went to Waco (FIXER UPPER!!!!)! We got to see Common Grounds, a little coffee shop that one of the first season couple’s owns. We went to Clint’s store (Harp Designs), and his house is right next door, which was one of my favorite fixer uppers they ever did. Then Scott and I headed over to the silos where Magnolia Market is, as well as the bakery, the seed and supply shop, outdoor lawn games, food trucks, and basically everything beautiful. Scott informed me that our friends set up a little private tour (so sweet!), so we got to go up to see the offices and got a birds eye view of all that was happening on the grounds. I got some pretty things, and before I died of heat, we left and headed to catch our plane in Houston. Whirlwind!

So now we are home, I got some more Doxil yesterday (by yesterday I mean almost a week ago, I almost finished this post then pressed pause for a bit). Our sweet kitten is growing, but still seems so tiny to me. She is so sweet, loves rubbing her face against ours. I’ve been feeling so much better than a month or so ago. I’m moving around on my own better, haven’t had any shortness of breath (or fluid drained for that matter). I still have other annoying issues with my body not functioning normally, one of which is my low appetite and weight loss. I’m debating talking to the docs about getting a feeding tube in my stomach so I can get feeds throughout the day to try to reach my calorie goal. I have got to stop losing weight. I feel like I look scary.

As far as prayer goes, we’d love prayer that the Doxil and Pazopanib would be working, pray still for full healing, pray for appetite and weight gain. Pray that Scott and I would be leaning in hard to Jesus. I know this season holds a lot of growth and closeness to Him if we’d allow it.

A few random things, I recently celebrated my 15 years since I began a relationship with Jesus, which, now that I’m 30, is half my life! Crazy. It’s so awesome to watch how faithful He has been. I had no idea when I set out the adventure He’d have ahead, but man I’m so thankful for a God that never leaves us or forsakes us. I read Psalm 119:50 the other day, and it says “This is my comfort in my affliction, that your promise gives me life.” I love that having life is not mutually exclusive from affliction. Just knowing Jesus gives life in any situation. I’d take him and all this craziness over perfect health without him any day.

Last thing! Sorry! I read this in Jennie Allen’s Restless the other day and felt called out and challenged. She is talking about her friend who is in a coma with young kiddos at home and asking God why. Did he forget about her? Forget how much she loves him? That her kids need her? She was walking in the lobby of the hospital (by a cross statue) and heard God say to her the following:

“I have forgotten nothing. And I am not passive about my approach to this problem. I deal. I deal with this sickness and pain and death. I do not forget. I bleed out for this. So as you walk past me on that cross, Jennie, into a room that feels out of control and full of suffering, don’t see a weak, distant, forgetful God. You see a God who tells oceans where to stop and a God who tells evil where to stop. You see a God who bleeds out for those you hurt for. You see a God who suffered first. I AM with you. And I have a plan here.”

Just real good stuff. I love that God weeps and mourns with us. That he walked the path of suffering first so I could look to Him for comfort. To leave on a really fun note, our sweet wedding photographer, Cara Dee, offered recently to give us the proceeds from her mini sessions, which is the sweetest, but on top of that, she said she’d be passing through our little town, and would love to take our pictures as well. We got our photos in the mail the other day and basically love every last one of them, but I picked a few favorite to throw in here:) If you’re from Lexington, hire her to snap your pics!

treatment & life update

Hey everyone! So for the past 2 weeks I’ve said almost daily that I would write a blog update, and obviously failed, but not today! All credit probably goes to the 2 units of blood I got yesterday giving me the energy for this. So an update on where we are as far as treatment goes, if you could picture a list with numbered options of treatments on it, we are 3 down the list with 2 options crossed off. So right now we are doing weekly Doxil, which is an IV chemotherapy, but thankfully I haven’t had any typical chemo side effects. We will add another med here soon that will be orally every day, with the fun side effect of turning my hair white (eek!). Please pray that these drugs would be stopping or slowing the cancers growth enough to stay on it. The problems with the other things we’ve tried is that they weren’t slowing it enough.

Since I reported in last, a lot has happened. I had another 900+ mL drained off my right lung, I had a 3 day inpatient stay to get my body used to TPN and lipids so I could get IV nutrition everyday at home. We did great with it in the hospital, but for whatever reason, when we got home and did it (it is an infusion that runs for 8 hours), it made me feel so awful. I threw up every time. So we are going to try without the lipids and see if I can handle it better. It would be a great load off if it would work, because it’s 80% of my nutritional needs, and I need like 4000 calories a day. With no appetite, that is impossible. So I guess another prayer request would be increased appetite/ability to eat and gain weight. I’ve lost around 20 lbs since this all started, which is no good. Looking sickly over here.

We are still waiting on MD Anderson in Texas to call with an appointment, which should be any day now, so I’ll try to keep you posted on that. Yesterday was chemo #2, and we were all ready to go home after, when we learned my hemoglobin was 7, and that I would have to stay to get 2 units of blood. So we ended up being at the hospital for almost 12 hours yesterday, yuck. On our way home Scott let me pick up a pizza, and when we pulled off to get it, we got a flat tire in the parking lot. Our sweet new kitten had been home all day by herself in the laundry room, we were so sad. I have a coworker that thankfully lives right by there that came to the rescue. Scott patched the tire and put it on with the help of her hubby, and we finally made it home.

Oh yeah, you read right. Scott bought a kitten! She’s the tiniest thing ever (can sit on my regular iPhone 6), and so sweet. Her name is waffles. I’ll include a picture.

In other news, my co-workers threw a benefit dinner for me on Monday night at Frida in Covington. It was amazing. They all organized baskets to raffle off, the food was incredible, the entire restaurant voluntarily opened just for us. They also donated $1000. People, seriously go eat there. It’s adorable, amazing food, the sweetest area, you have to go support them. I think the benefit raised over $6000. So thank you so much to everyone who came and who made it happen. Scott and I are so blown away.

On that note, I’ll post a video here because typing words won’t do justice, and we can’t possibly write thank you notes to everyone who has supported us financially through our go fund me page, or just sent checks in. There are hundreds of you, literally. So please, if that’s you, watch the video! You can watch that video here at Vimeo, Go check it out there, please, especially if you are someone who has given to us in any way, shape, or form!

This morning I listened to an old Rend Collective album, and the song Lighthouse came on, and I almost couldn’t believe I didn’t connect the dots sooner. So many people have cast this vision over Scott and I of steering a boat into harbor outrunning a storm, and this song is so perfect for that vision, and so encouraging. My favorite lyrics as I was listening this morning were, “my lighthouse, my lighthouse, shining in the darkness, I will follow you…I will trust the promise you will carry me safe to shore.” and “fire before us, you’re the brightest, you will lead us through the storms”. So good for my heart this morning. Just a reminder He is going before and behind us, and because of that we can face each day full of peace.

Y’all, one last thing. For my birthday, Scott let me order wood signs from my friend Angie. She has an etsy shop, Thirsty Heart Designs, that is incredible. She specialized in hand lettered items. So we gave Angie a couple of our favorite verses in Isaiah, and she wove them together and delivered our signs yesterday. I’ll leave photos of those below as well. Go check her Etsy store out here!!

Thanks for sticking with me. Love you all. Thank you for praying. Jesus is our only hope right now, and while it’s a sad and hard situation, it really is a blessing for Him to be all we have. Because we know in that that He is all we need.

Leslie + Troy | 5.14.16

It’s finally time for Leslie and Troy’s wedding pictures! Sweet Leslie has been so patient. I know Leslie from work. We started within a few weeks of each other. When Troy popped the question we went into planning mode at work whenever we had a few minutes. So being able to see this day come to life for her was so fun. Leslie and Troy’s wedding day (in MAY) was freezing! It was so cold, and all the grass was soggy from the rain leading up to the wedding day. The ceremony had to be moved to the basement, and the soggy ground limited us a bit in our photo locations, but we persevered! It was such a sweet and intimate wedding, held at her parent’s house, and it was just family present. No wedding party, no big crazy schedule, just laid back and sweet. Even if things didn’t all go as planned, at the end of the day they were married, so it was a perfect day.

I loved that every detail was DIY. Leslie did it all. She and her family made the cupcakes, the centerpieces, the food was even catered by family members. Scott and I were guests as well, so we got to take home sweet chalkboard mason jars with our names on them. Editing has taken a long time for me. Being on pain meds allows me only 5 minute increments of concentration, so I’m sure everyone involved is so excited this is finally happening. Also, my sister-in-law deserves a huge shoutout for doing some photoshop work on these (putting grass where there was concrete, taking out decks in photos, editing out the sheet we had Leslie stand on…)so thanks Leah, you’re the best. I hope you all enjoy!

Life since the bad news

So we kind of dropped a bomb here then left you all hanging. That was unintentional. We have had a lot of peace since finding out, which is entirely the holy spirit. I’ve also noticed a very direct correlation with my time with Jesus and my attitude or outlook. When I spend time with him, I’m good and at peace. When I don’t, my patience runs out really quick and I’m more likely to focus on the negative and be upset. Reminds me of the vision we got at Crossroads about keeping our eyes on the harbor  and not on the storm.

So it turns out that when you have cancer and it’s not surgically removed, it hurts and is very uncomfortable. This is a first for me, because in the past they’ve always been able to take it out. I’ve been seeing pain team to keep the pain and discomfort under control, which has been great, but also it has made me exhausted. I could sleep 24 hours a day and still be tired when I woke up. Scott keeps finding me sleeping sitting up. They’ve also given me Ritalin to help me stay awake, so when there is a day I really want to be up and alert for, that has been helpful.

Along with the pain, another struggle has been shortness of breath. It is worst in the morning before my pain meds soak in. I move slowly. I told Scott I wasn’t going to judge slow walkers anymore. Right before we left for vacation they drained 650mL of fluid off my right lung, and that has helped tremendously. It helped with the shortness of breath, and also took away the pain I had when I hiccuped, which was bad enough that I had to yell out in pain.

The past 2 times we’ve had labs drawn, the tumor marker has leveled off an stayed the same, which is good. It was going up by 10 every time we had it drawn (weekly). We get more labs drawn tomorrow along with a CT to check on how much change there has been since the initial scans. We are obviously hoping for complete healing, but at least would like for it to be less or staying the same.

In other news, we are going to visit MD Anderson in Houston to see what options and trials they have available. We will call tomorrow to make an appointment. They have been working closely with our doctors on my case, so we feel good about that, and we can rent a car and go visit Magnolia Market in Waco. So I’m pretty excited about that.

Our friends have started another page to help us out financially with another deductible around the corner, and travel expenses for our consult in Texas. and we are so blown away by everyones generosity. If you gave, know that Scott and I could not thank you more. From the bottom of our hearts it means the world to us. It is one less stressor to worry about. Speaking of that, you all have taken such good care of us as far as meals go. We have not had to worry about dinner for weeks now, and really haven’t had to go to the grocery store. Which is especially great for Scott, because everything is sort of falling on him around here these days. He is the best. He serves me non stop and without complaining. I am so blessed to be married to him.

One thing that repeatedly keeps showing up as a theme around  here is that God has big plans up his sleeve. So many people, including those we know, and those who are just hearing our story for the first time, are telling us that God has pressed it on their hearts that God has healing in store here, and that this isn’t the end. We feel the same way. We are trusting Him for big things over here, and whichever way he chooses to answer our prayers for healing, He is still good. In Daniel when the 3 Israelites were about to be thrown into the furnace they said, “If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” (Dan 3:17-18). So we are over here, fully confident that God can and will heal. But in the same breath, if He chooses not to, we know He is good and that He loves us, so we can trust his plans, even if we hate that plan. I just finished reading Tim Keller’s book Walking with God through Pain and Suffering, and I have to recommend it to anyone who has ever struggled with the idea of suffering, or anyone that is walking through suffering themselves. One of the things he said, and I believe to the core of me is, “Instead he gives us what we would have asked for if we had known everything he knows.” I know it seems like stretch to say I’d ask for this, but it’s also a stretch to say that I understand the unfolding of history better than He does. My favorite example was when he talked about Jesus hanging on the cross, what the people around watching must be thinking.

“But then, there you are at the cross with the few of his disciples who have the stomach to watch. And you hear people say, “I’ve had it with this God. How could he abandon the best man we have ever seen? I don’t see how God could bring any good out of this.” What would you say? You would likely agree. And yet you are standing there looking at the greatest, most brilliant thing God could ever do for the human race.”

So that’s about it for now over here. Please be praying for scans tomorrow, and pray for this coming weekend, we have a friend who is a part of a healing prayer ministry coming to pray over Scott and I. We know without a doubt that Jesus can heal, we are praying that he will. Oh man, I can’t not include this.. Scott and I went to the beach this past week (blog with photos in the near future), and while we were gone two different friends showed up to surprisingly clean our house. The first was such a surprise, Scott didn’t even know it was happening, so when my friend Shannon came getting his approval, she showed up to a pretty clean house:)But how sweet? She also stocked our freezer with meals (Thanks Shannon and Bob and Jeana and Owen!). Then we got back home, and my old bible study from Lexington came to hang out and love on me on Sunday. It was glorious. We just relaxed, talked, they made me delicious smoothies, they prayed for me, we all cried, and they drove all the way back to Lexington. I’ll leave a photo below from that:)Thanks for sticking with this especially long update if you’ve made it this far!

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