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!