Trying to be Joyful during round 3

 Round 3 is today. I can say that I am not super thrilled to be here. While I don't feel like I am in black and white, I am not the same fresh faced colorful version of myself that walked in for round 1. I am wearing colorful clothes and make up. My hair is freshly washed, but I just really don't want to be here and doing this. I have to remind myself that I can do hard things. I have done hard things all my life. Honestly, I don't think I know what easy would look like. 

I did wake up with a song on my heart this morning. The lyrics that replayed in my head are:

I know who goes before me
I know who stands behind
The God of angel armies 
is always by my side

The song is Whom Shall I Fear by Chris Tomlin

Silly me decided to just bring my devotion book with me today instead of doing reading it at home. It kind of hit me in the face this morning. I am sitting here and really not happy to be here...then again, who would be? I am not looking forward to being knocked back down by all of the side effects. I think I am feeling anxious...at least that is what my stomach is telling me. I am tired. I do not feel the energy and joy I have felt over the last few days. It feels almost as if it has been sucked out of me overnight while I slept. I am not even hooked up to any drugs yet! I opened the devotional and the verse is "The LORD take pleasure in all He has made." Psalm 104:31 In my head, I am thinking -okaaaaaaay.  The take away (at least for me) is that we should reflect joy. Today, I am not reflecting joy. I am not even acting joyful. I am kind of sulking. My current situation does not put a smile on my face. However, that does not mean that I can't be joyful. I need a change in perspective today.

I am trying to soak up the time that is between blood draw and getting connected to meds. What does that look like today? Well, I have a cup of coffee, a cup of water, a pillow, blanket, and reading material. I am about the play the easy, medium, and hard NYT sudoku games, and then take the first of many trips to the bathroom. My plan is that once the premeds are hooked up and flowing, I will watch yesterday's message online. From there...there are no set plans. I am hoping and praying for an easier infusion than last time, but realistically, I know it doesn't get easier. So, on to sudoku...

The FOL and OX are now flowing. So far it is at the normal rate, but may be slowed down based on my experience last time. I am trying to ooze joy. I am looking at the wedding venue Samantha picked out and trying to think through all of the things. How will we decorate and add color. Cake? Photographer? Flowers? So much to think about. It has literally been minutes and my fingers are already feeling some numbness. I just want to stick my tongue out at all of this. Would that be too childish? 

The OX has been slowed down a little. In addition to my fingers, my mouth, face, and feet have some numbness and tingling. This is where I have to tell myself to find the joy. 

The joy is not in watching the Young and the Restless. The current story lines are so stupid. Guess I will go read...

There is joy looking at my dog blanket. 

I am not sure if all infusion places do this, but Methodist will provide lunch if you are here during the lunch hour. I have tried to order something different each time. 

Today, I opted for softer foods in an attempt to not have a horrible first bite sensation. I was not impressed with the look of my baked mac and cheese and roasted sweet potatoes, but it tasted ok...at least I think it did. I couldn't really taste it. I guess this is a good time to try some of those foods that I don't like. Well, maybe not. My nose still works and there are some foods that just smell funky. I already can't drink the iced tea. That happened earlier this time. It feels like needles going down my throat, not that I have ever swallowed needles. I am saving my pudding for later. I think I am full. I am not sure though, my stomach was already in knots when I arrived this morning. 

On the bright side, I have yet to have the headache issue from last time. I am not sure about the blood pressure problem, because it was normal when I came in this morning. The only "new" issue I am feeling is a little discomfort in my neck. I am sure it is because the "healing juice" is going up into my jugular. I am also more tired. Last week I felt more amped up from the steroids. I am praying for none of those crazy muscle twitches and spasms. They were so bad last time. It comes from the 5FU that I will get in a bolus later and then come home wearing. I plan to try the fanny pack out, since that is how I am wearing my pump anyway. I don't know if I will like it though, it looks so big and bulky. I think it would be easier to sleep in and wear around the house, but not really good when wearing real clothes. It may offer more protection from jumping dogs though. That would be a plus. Guess we shall see. Today's nurse was confused as to how I was wearing the other around my waist. Guess I am just innovative. 

Rodeo starts in ONE WEEK! I am so excited, yet not. I am going to have to miss out on a lot this year. I am going to see Reba. I am the MOST EXCITED about this! I am on a committee and plan to fulfill my job. I am trying to trade a shift, but am not having much luck. I think I am limited on how close together I can schedule myself. I know...many have said that I should just skip a year. That would boot me off of the committee. This is one of those things that I have wanted to be a part of since I was a teenager. My friend and I practically lived at the rodeo as teens. Sometimes we had tickets, sometimes we didn't. We just loved being there. We would leave from school and head over to the Astrodome. We would change into our best rodeo wear while sitting in traffic on 610 in front of the Galleria. Thinking back, I wonder why we didn't just change in the locker room at school before heading out. I guess we just wanted to be there and thought that was a waste of time. I truly have no idea though. I have thought about committees many times over the years, but being a busy mom of four, it just didn't seem possible. Besides, it was ball season. I lived at the ballpark nearly every night of the week while the kids were little. It just wouldn't have worked out. Then after my mom died, I kind of struggled to find myself...or whatever. On a whim, I signed up. I went to the interview and was put on a team. There were a lot of open spots because the committees were still trying to rebuild after COVID. I think this is the first year of full teams on my committee. I don't want to give up my spot due to cancer/chemo. It will not take this joy from me. Walking into the empty stadium each night feels like going home. Even now, I can smell all of the smells. I can feel the air and the excitement. The dirt just brings up so many fond memories. I can't imagine not being there. 

As I said, I am going to see Reba. She is night 1 on my off chemo week. I work my shift 2 days later. I should be ok. My next shift is a Tuesday chemo day. I plan on working this one. I will be amped up on steroids and should be able to hang. I may have to request a few more breaks though. I have made my team captain aware of the situation. I am trying to get switched off my Sunday shift for a Monday. I am not having much luck. I can do Sunday physically, but would prefer to be at church. Then my final shift is on the 21st, Parker McCollum. No worries about that one. The problem is that I really really really want to see Brooks and Dunn. They are there on the 22nd. I can't find reasonable priced tickets. This one would be hard to do, due to working the night before. This would be one of those times where Samantha would have to push me there in a wheelchair. Once in the stadium, I could check it and walk. I do not want to get stuck there and not able to walk back to my car. Given the wheelchair option, I am trying to find tickets on the 1st level...or even the 3rd. It is really not feasible to be in the 500's or 600's. Normally, I would just walk in using my badge. The problem is that I know I will not be able to stand the whole time and there is no guarantee of a seat that way. So, if you know anyone with tickets to sell (at an affordable price), let me know! 

I get so much joy from all of the smells, samples, shops, and just walking around the grounds. This year is going to be really hard mentally. I love watching the rodeo competition and getting to know the cowboys (not personally) and their stories. I like seeing the ones I have followed for the last few years. I just love all of it! I may have to wear my boots on regular days just to make it feel like I am going to rodeo! 

All of this rodeo talk is making me excited for the season. This excitement is not good for my bladder. I am trying  to distract myself. I made the mistake of looking at the bag of juice being pumped in. I still have a ways to go and the drip, drip, drip hasn't helped my need to pee. I just don't want to disturb the nurses. Someone has to come unplug the machine and walk me there. Then they have to stand outside the door while I do my business and listen to me attempt to wash my hands, because I will forget it hurts. I don't know if I can wait though. Then again, the Leucovorin (FOL) is almost done. It will make the machine beep and the nurse will have to come in...

Phew! My bladder is empty! Washing my hands didn't hurt too bad either. Only one little knife like feeling. Some people have said that sucking on ice during infusion helps with the cold issues in the mouth. Well, I don't see how it is possible to suck on ice for hours. However, now that my tea is gone, I have put a piece of ice in my mouth and just let it sit. It is a VERY strange feeling. I do not have the vocabulary words to describe how it feels...it is just odd. I can circle the ice around and the feeling follows it. After the ice melts, the feeling goes away. I have gone through about 5 ice cubes trying to figure out how to describe the sensation. I can handle this feeling. It is the knife feeling that I can't handle. I am hopeful that I can continue my morning protein smoothies despite the cold. They taste so much better than warn ensure. I just had to talk after having ice in my mouth. My tongue was apparently numbish. Oops! I now have a warm blanket on my neck - port side. No redness or swelling, just a little uncomfortable. My mind of course goes to the worst case and it puts me in anxiety mode, which finds even more worst cases. What is worst case? I don't really know and I won't google. I just have always been panicky about blood clots, so my worst case in my head is a blood clot along the port line. Hmmm...my lips are now numb. I am sure it is OX related, not ice related, but I think I will skip the last few pieces of ice. 

Can I just say PRAISE GOD? I haven't had the headache and other issues that I had during round 2. The OX only has a few drops left. Next up is the bolus of 5FU before being hooked up to the pump and sent on my way.

The 5FU (I think) is the one that caused the horrible finger and hand cramps and the very odd lip cramps. I am praying those are not as bad as last time. Really....who has to take a muscle relaxer for their lips? It was so stinking bad and it kind of hurt. It made it hard to talk.

So, it is possible that the discomfort is still from the port placement. It can take 6 weeks to heal. I joke with the nurse that it is just weird and uncomfortable. She laughed and said you get used to it and might even name it. I don't know. I am counting down the days until its eviction. 

My pudding is gross. It is disappointing. I am sure it is fine, but I can't really taste it. There is a taste, but I can't put my finger on it...it does not taste like chocolate pudding though! This takes the joy out of eating! I will not be finishing the pudding. 

I am hooked up and at home. I did not go with the fanny pack...it was just too big. My feet were so ...don't know the word...when I left. Maybe heavy... It is like I couldn't pick them all the way up when walking. It made me almost trip the whole way out the door. I had first bite syndrome with a drink. This was new. I took a drink of ginger ale and my whole mouth hurt for about 20 seconds. Then I ate a cracker and it was all fine. The nausea has already kicked it...way earlier than normal. It usually hits at 1:30 in the morning. It is ok though. Overall, I would say that today was better than the last time. I am going to relax for about half an hour before taking Hannah to her game. 

Thanks for the prayers today. Sorry for no funny stories to go along with it...maybe next time. I will say that I am more joyful now at 2:30 pm than I was this morning when I started typing out the events of my day. Rodeo talk???? Or just trying to find the joy??? 

Also, I was serious about wanting Brooks and Dunn tickets! I had someone offer me 2 for $300, but I am not paying $150 a ticket for a $62 ticket.