Day 1 of the "Healing Juice"

 Well, today is the big day! I took something to help me sleep last night, so when my alarm went off this morning, I was not happy. I chugged an ensure and enjoyed my coffee before heading out for the 35 minute 6 mile morning drive to the hospital. 

<This post will be done in increments throughout my day>

For the first time in my many trips over the years...thanks broken finger and 4 surgeries to try and fix, I valeted my car. I stopped to pee before checking in...I am thinking nervous energy puts my bladder into overdrive! Sorry, TMI. I think I have had to pee about 6 times in the last 2 hours. No, it is not a UTI...just my body being my body. After my first potty stop,  I went to check in. That is the moment reality slapped me in the face...again. The receptionist could sense my unease immediately and tried to reassure me. I kind of don't like how my face gives me away. I need my face to keep its mouth shut! There were other people in the waiting room. One looked like he was near the end of his journey. He may have been young or he may have been old, I couldn't tell. The other really showed her age and frailty. Will this be me down the road? Did they walk into this place a year ago looking like they were full of life and ready to conquer the world? Will I be in their place in a year watching some younger patient walk in dressed with hair and make up done thinking 'this chick has no idea'? It was almost as if I was walking into a black and white setting, but I was in color. 

I got called back and quickly asked to use the bathroom again...darn bladder. I feel like a lot of information was thrown at me that I have yet to process. I am learning the order of the day as I go. The first step is to get blood work done. Then I get to chill in my room waiting for those results...unless I have an appointment with the doctor. In that case I will go across the hall for the appointment and then come back. I have just been told my blood work is good, so my orders have been sent in. I have placed my lunch order and had more coffee...maybe that is why I need to pee again! I should probably do that before I get officially hooked up with the premeds. I learned today that those meds include steroids, plus I have a prescription to take more over the next two days. I am not thrilled with this. I was hoping to avoid the steroid route. Maybe it is vain of me, but my body is going to be going through enough horrible changes. I didn't want to have to deal with the puffiness in my face and extra fluffiness in my belly of the steroids.

My nurse navigator just left. She remembered me talking about my dog, so she brought me a blanket with dogs on it! There were also some other goodies in the bag too. We talked over some of the stresses and other things. I am now hooked up to the premeds, which is antinausea, the steroid, and fluids (not saline).  I lost my train of thought and where I was going with this. There were a lot of people in her talking to me and giving me info. I really do like my nurse navigator though. 

An hour later...it has been a whirlwind. The pharmacist has been in here for a long time discussing the meds and all of the side effects. While she was here, my nurse for the day and another nurse, got all of the chemo drugs running. One is chemo and the other is something else that helps the other chemo (the one that will go in a pump for the next 2 days or maybe this one) work better. I am praying for no side effects, but my hands and feet are already tingling. Guess that means I will be hit with the neuropathy. Other than that, I am kind of really  tired now, so I may try to nap through Young and the Restless! 

So, I didn't actually nap. My lunch arrived and then Marc arrived. I think I ate about half my soup, half my salad, and half of my pears. My lips and tongue are kind of numb and tingly. The nurse talked to me and this is confirmation that I will have the cold sensitivity. Some people don't get it until further into treatment...at least that is what they are telling me. This kind of worries me because I don't want permanent nerve damage in my hands and feet. I was instructed not to wash my hands on my next trip to pee. That was hard! I had to use hand sanitizer. I kind of expected that, so have a box of the stuff on my table at home. I am also having brain fog. I do not like it! It is making me feel stupid. Why is this messing with my brain function? This is the perfect time for my kids and husband to have a chance at beating me at trivia, especially if it is timed or the winner has to be the first to answer! 

I guess I am about more than halfway through the infusion that will be done here. Then I will get a bolus of the 5FU (I kind of feel like those initials seem appropriate given the circumstance) before I get set up with the pump. My BIG dislike is that I can't shower while hooked up to the pump. None of the stuff can get wet. I do NOT like this. Don't worry about me stinking...I will find a way! I will sit in a half full tub to wash off if I have to. My problem is that I can't wash my hair. Y'all, my hair gets gross so fast. I try to not wash it everyday, easy since I am not running right now, but even on the morning of day 2 it already looks so dirty and oily. I am going to have to figure this one out. Dry shampoo just makes my hair sticky and oily. It doesn't do for me what it does for others! I might have to see how much a salon charges to wash my hair. I just can't have any cold water used. Maybe if I wash it early Monday's before my appointment, then I can squeak by until Wednesday night. Since I did not do that this morning, I will have to figure something out. 

Someone shared this passage of scripture with me. Actually, I have had a lot of scripture shared and I am thankful. This particular scripture is from Psalm 103:1-5

Praise the Lord, my soul;

    all my inmost being, praise his holy name.

 Praise the Lord, my soul,

    and forget not all his benefits—

who forgives all your sins

    and heals all your diseases,

who redeems your life from the pit

    and crowns you with love and compassion,

who satisfies your desires with good things

    so that your youth is renewed like the eagle’s.

So much of this resonates! This is not an unfamiliar passage for me. Years ago I was helping with Summer Week of Choir and the musical we were doing had this passage as a song.  I have frequently sung these words over the years. I am thankful for years of SWOC that has helped with scripture memorization by putting God's Word into song. Some have asked if I am angry with God. No, I am not. I get angry that this is happening to me, but that anger is not directed at anything other the situation. Truthfully, I feel like it has made me lean on God more. This may be what breaks me of my need to always be in control. I tend to surrender, but not fully. Right now, I have zero control over what is going on inside of me physically. It drives me insane! I have no idea of what to expect...well, outside of the book of side effects. and it drives me insane! I am not in control. How can I not surrender? The churchwide devotional we are going through this year is great. I don't usually feel this way and end up dropping it by the end of January. This year is different. Some days I want to keep on reading. I have to stop myself and focus on the today. The devotion is Experiencing God's Presence - "The Presence gives us peace, assurance, and strength." While I have my fears, worries, and anxieties, I am uncharacteristically at peace (most of the time). If you know me well, you know this is completely out of character. Sure times of anxiety can come and overtake me at times, but I don't linger there. I have assurance that God is with me. God will use this somehow. I have strength knowing that I can get through today. It may be one day at a time or one hour at a time, but I can do it and I am not alone. 

I thought I had learned how to accept help and communicate needs that arise, but this experience is teaching me that I still have a way to go with that. One thing I have started accepting is hugs. Many people know that physical touch is not my love language. It doesn't even get a vote from me as a love language. It is negative on the scale! If you are curious, my love language is quality time.  Though this, I have realized that some people just need to give me a hug. This may be because they don't know what else to do or because it is a way to show that they genuinely care or maybe it is their love language.  It is ok! Well, not ok if you are sick...please stick to a distant air hug. Honestly, I don't even know what to do and would hug myself if I could. 

New drug is getting infused. Next up...another trip to the potty followed by observation time and getting set up with the pump. 

So, I had to ask if it is normal to have to pee so much because I was about to dance right on our of my chair. Aren't you all glad you now know about my pee habits? I have been reassured. It is normal due to all of the fluids being pumped into my body. They would worry if I didn't have to pee. However, I did accidentally wash my hands out of habit. It felt fine at first, then it didn't. My finger tips feel very prickly right now. It is not a feeling that I can really describe. I have never felt it before, so I don't yet have the vocabulary in my brain to describe how my fingers are feeling...Prickly is the only thing I can come up with. I kind of hope it goes away sooner rather than later. My water also developed a different taste. Again, I can't describe it..it just doesn't taste like water, but does water even have a taste? 

I am so glad for random snacks in my bag when sudden hunger hit. This was not like a normal hunger that I could put off. It was an immediate need for food. I don't know that I am really hungry for the whole thing, because three bites and I am fine now. I did experience something called "first bite syndrome." Who knew that was a thing? That first bite that I was ravenous for hurt in my teeth and jaw area. That makes me really want soft foods! This is going to be a wild ride! As you can see, I have already listed some of the side effects that I am mildly experiencing now. I have been told they are progressive as time goes on. This is infusion #1. Whew...11 to go! I am praying and have asked others to pray specifically for the side effects. I would like to have none or at least for them to be mild. I know what to specifically pray for right now with the FOLFOX treatment. 

I did not eat all of my RXBAR.  I have the other half sitting next to me just in case I have that feeling again! I'm about to get hooked up and ready to go home. 

I am now back home with my designer bag which contains the pump that will be giving me the 5FU over the next 2 days. It makes such a fashion statement! When I got home, I immediately made sure all of the things were under my shirt. I love my giant lapdog, but I don't want him to catch anything in his excitement and pull anything out. I took some antinausea meds and really want to just nap, but it feels like my body is fighting it. I want to sleep and wake up with all of the weird effects gone...I know, it's not likely. My fingers started cramping while I was driving home. It made unbuttoning and rebuttoning the shirt quite difficult. I have made the mistake again of washing my hands. I am sure some sort of classical conditioning will happen soon and I won't keep making that mistake. Speaking of classical conditioning...did you know you can tell what people are Texans in a big group of people? Just start singing, "The Stars at Night ,are big and bright..." and all Texans will immediately clap clap clap clap. Texans, admit it! You sang and clapped as you read. Now you are trying to think about all of the other things you have been conditioned to do, I know I can't be the only one!

I am actually embarrassed about how many times I have had to pee today. Let's just say, I lost count. All I can do is shake my head. 

If you would like specific prayer requests for today, here ya' go. I greatly appreciate them and have been humbled by the people who have been praying. I have yet to experience the 'stomach issues' that can come with the drug in my wanna be fanny pack. Please pray against those. I have a mild headache. The numbness and tingling in my mouth and tongue does not feel good. The neuropathy in my hands and feet is way more intense that I thought it would be right at the beginning. Please pray against this one because not only goes it get worse with each treatment, it can be permanent.  These are the things that are affecting me right at this moment. I did just have a few PACs, but I do get those sometimes. That being said, it makes my brain wonder if it is being triggered by the meds. If so, when (or if) does it become a problem that needs to be brought up? I also just ate a banana and it does not taste like a banana. I love the tastes of different foods, so this may be challenging.

I love y'all and thanks for the prayers, texts, emails, cards, dinners,, even hugs, and I really loved the ecard with the dog video. 

UGH, I have to go pee again!