Another Dose of Depocyte

It’s been a few days since I’ve blogged, so I just updated our DC trip and finally have a quiet moment to catch everyone up on things. Thursday was my second intrathecal dose of Depocyte and though we premedicated, I sat there while she was administering the drug saying to myself “uh-oh.” I felt the warm rush through my tows and back up. It was coming and she wasn’t done!!! I just breathed and kept opening my eyes waiting to see if she was putting the spinal fluid back in yet. I knew if I started vomiting, the needle would rip out of my head. It took everything in me, everything was spinning and there it was. The same reaction as last time. I wanted to cry. We had to get me to the bathroom as it’s not a one ended kind of expulsion (sorry for the TMI). I was staring off and on at the tiles on the floor watching them move! I was tripping! It was insane and finally made it back to my chair where we would have a repeat of two weeks prior. Except I somehow didn’t feel like I needed the ambulance, just sleep. Pass out, vomit, pass out, vomit. Finally around 4:00 (same time as before) I was coming to. We got a wheel chair and to the car we went. The brightness was too bright but I felt okay. I was not feeling like I needed to sleep, just my stomach was needing to eat itself. We stopped at Starbucks for my traditional pre or post caffeine, but it tasted disgusting with bitter vomit mouth. Oh well. I didn’t tell Skip until later the next day, but along the way something strange was happening. I kept thinking I wuld see something out of the corner of my eye, and I would turn and nothing. I realized there was a heaviness on my right side of my face and when I looked into my peripheral everything was melting!! I’m not sure if you’ve ever seen oils splashed with turpentine, but the colors literally melt away down the canvas into an actually beautiful swirl of colors. Think of the movie “What Dreams May Come.” That was what I saw! I shook it off several times and just closed my eyes. It soon passed and we were approaching Kroger. I wanted tomato soup and grilled cheese for dinner. Nothing else. I had made a grocery and weekly dinner list on the way home from DC and Skip was going to drop me off and go back. I knew that would not work and I thought walking may help me get back to some normalcy. It did. We shared a big buggy, he ran down the aisles as I pointed and in his arms we walked. It was actually really romantic and so sweet. We made it home, mom and Warren left for their home, and I sat upon the counter to fix our dinner. Yum, yum, yum, is all I have to say, until later that night when I had massive indigestion from the tomatos. Oh well, totally worth it. I’ll remember next time, just a plain girl cheese (that’s what I called it when I was little). Miraculously, I was feeling quite okay and the recovery this go around was easier. I went to bed early, slept terribly, but awoke Friday as normal. I was still having massive acid reflux, but at this point I was taking it. I took the girls, enrolled them back into school (Madison is ECSTATIC, Alana, I’m not sure yet), stopped by CVS, bank and library, and then off to “back to school shopping.” I knew good and well this was “too much” but whatever, like that has ever stopped me before. And walking as we know, keeps the spinal fluid flowing. So we hit all of our favorite stores, scored some incredible deals, and had a total blast doing it! Spent some Christmas money and gift cards, and ate Annie’s Pretzels, our favorite and made our way back home. I’m so glad I got to spend another back to school shopping with my girls. Meant the world to me. I can’t wait to go back next week, as I’m totally going Christmas shopping next! Saw some cool things for some cool people!!

We all decided movie night was in order, so after making killer chinese for dinner, we all cuddled and finished our Jurassic series! Jurassic World! I love these times with my sweets and look forward to many more. As usual, Alana said her prayers with us and moved me to sickness. I know God hears her and all I can say is “Lord, hear her prayers.” She repeatedly asks for nothing else, just my mom to be healed. I know you can, etc. I live for the prayers and at the same time, I cry at her prayers. They are truly innocent and real. I ordered the children’s circle maker book today and hope to try to deepen their prayers and make their circles. Something different as we go into this new season. I did hear spring is just around the corner, and I take that as a sign of rebirth, beauty and growth. It’s one of my favorite seasons, and I have faith God is going to do big, beautiful, good things this season.

Today I had to climb out of bed, as my head was hurting all night. Across my face must be where the bulk of the inflammation and disease was fighting. I used my Frankinsense as much as I could, even putting it upon my brows, but I knew it was time to get up. Realizing my stomach has not been quite the same since the dose, I’ve also resorted to #prayforpoo because my intestines have ceased to work since which scares me a little. I know renal failure is a common sign of LM and would love to just not go there. Ordered a massive amount of Starbucks this morning that a sweet friend went and picked up and living off fluids today. Took my hot bath as well and meditated with the Lord from sun up through the morning. It’s been a beautifully quiet day, even among the pain that comes and goes, I know my God is with me and comforting me. Healing me and helping me.

Early this morning I read about change, and have been trying to let go of some doctor stress and it really hit home. “As the winds of change start to blow in your life, may you lean in and listen for the voice of the Lord. Instead of looking for signs, and mistakingly drawing the wrong conclusion, may you instead look to the Lord and His strength.” I’ve had a nudge over the last few days to head back out to MD Anderson, so that is something I’m waiting on the Lord to confirm. I have a doctor appointment with Dr. Dunbar Monday at noon, that I’ve also given over to the Lord giving me much peace. So this morning as I read that, and the corresponding Psalm in 19, I found myself reading on over to Psalm 23 where I just found myself once again reciting it and reading it over and over. I finally looked down at the notes, and was gracious for His word again.

“Death casts a frightening shadow over us because we are entirely helpless in its presence. We can struggle with other enemies – pain, suffering, disease, injury – but strength and courage cannot overcome death. It has the final word. (I LOVED how it referred to my enemy as the disease)   Only one person can walk with us through deaths dark valley and bring us safely to the other side – the God of life, our shepherd. Because life is uncertain, we should follow this shepherd who offers us eternal comfort.”

It just spoke to me in a cool way today. I decided to just lean into God with all I had this morning and there was something he whispered in my heart. Guardians. You are all my guardians, here and in heaven, helping me and my family fight the enemy and he is giving us an amazing power that we would never be able to comprehend here and now. But it gave me extraordinary peace and a new perspective on this fight. I’m surrounded by guardians, by angels, by loved ones, going into battle by prayer, petition and non stop service to me. That I am grateful beyond measure for and thank God tremendously for your faithfulness. God bless you today and every day and don’t give up! We are fighting a good fight and I plan to show the world that miracles DO and STILL happen along with all of you.

We together, are undefeated, and ultimately undefeated in our Lord.