A Week in the Life...

(This is my to do board. It is a visual of each step I have to take/have taken. It goes from my initial diagnosis to my surgery consult that will be after the first of the year. So much to do but look yall, so much already done!! God is Good!)

Monday marked my 3rd chemotherapy, 3 out of 5 are done! I also just got back from my 11th out of 28 radiation treatment and head back there tomorrow and Friday for my 12th and 13th!!! As the saying goes...how do you eat an elephant? One bite at a time. I am just keeping the finish line in my cross hairs and keep taking steps

I thought a few might appreciate hearing about how the experience of chemo/radiation days is panning out and how I am progressing through the week after infusions. Never know who may stumble here sometime ahead. If it is someone starting their own chemo journey...know this: You are stronger than you think and there is more good even in the midst of the bad than you can imagine! 

Sundays 

It all begins for me on Sunday evening when I take my prechemo steroid. I am on Dexamethasone which is 25% stronger than prednisone or something like that? 

Because of my diabetes I have to really watch what I eat on Sundays because steroids in general raise blood sugar. In fact, to help be proactive on this, I was given training on using insulin and actually this week had to take my first two doses ever. My sugar was over 325 most of the day. The insulin pen didn't hurt to use and it really wasn't complicated. It just feels like a setback to me using it. 

Prior to my diagnosis, I was on track to reverse my diabetes with just diet and exercise. In fact, November was supposed to be my checkup appointment to reduce my oral medication if I was still on track and I have never required insulin at all, even during the peak of my diabetes journey. It's just one more sidestep in my "normal" and I have noticed it more profoundly. 

Yet, as with everything, there is a flip side of the coin because I really do appreciate having the insulin here at home so I can manage and adjust as needed. Not having it would mean traveling to the ER when it starts to trek up significantly and well...no one needs to be told how inconvenient and dangerous that could be in the middle of virus season. 

Mondays

I get my chemo/radiation and lab draws on Mondays. Every other Monday is also my turn to have a follow up with my medical oncology doctor. Generally speaking, by the end of that day I feel really wiped out and drained. I think some of it is just my body's response to what all we just dumped into and radiated inside of it, but a good portion is probably that emotional letdown of completing a few more pivotal steps too. On a non-doctor day, I show up on the chemo infusion floor, it is an entire floor. They access my chest port and draw labs and hook me up to saline IV while we wait on the results of my blood work. I am grateful that they monitor all my levels so carefully. As I mentioned before, I have been struggling with low magnesium from the very first appointment, so I typically get both of my chemo drugs and various bags of magnesium thrown in there too depending on my actual numbers. 

(At this place, the chemo drugs all come with the black plastic cover over them. Some it seems are light sensitive. Mine in particular aren't but the pharmacy just sends them all that way)

I get to pick my own chair when I get there, and I have been picking chairs by the window whenever I can. There is something in getting to see out that helps me to not feel like my whole world has stopped spinning. Most of the views include the highway, which is typically in some state of gridlock but, even that looks like freedom when I am tied to the Infusion pole getting my IV drips. 

(That is downtown Columbia, SC in the distance)

They run the bags separately, so I am there for several hours. After the first visit, Paul and I joked that it was kinda nice to have the uninterrupted "us" time. We commented how it almost felt like a date lol (Yes, I know, we realllly need to up our date game lol) We decided to run with it and now, it is our weekly date time. 

We really love to play family games but some of our personal favorite strategy ones the kids lose interest in after a few rounds, so we decided we would bring our current favorite one, Dominion, with us each week to play. It has been nice to reframe the experience from "This is when you get your weekly poison" to "This is when you get to beat your husband at Dominion." lol The second one just has a better ring to it don't ya think?  

(He did beat me this past week lol) 

We have also gotten to have a few nice conversations with other people getting treatments. It really helps ground me to see that I am not alone. Sometimes we can get wrapped up in our own world and forget that we are just a drop in it all and everyone is carrying a load on their shoulders in some way. 

By the time we leave on Monday, I am completely wiped out. I'll admit I have surprised myself with how strong I have been through this (something I credit God entirely with) but Monday's typically bring me to tears.  It has definitely been a hard thing...but I can feel the momentum building and forward movement and know this too shall eventually pass. 

Tuesdays and Wednesdays

Tuesday and Wednesday I seem to rebound a bit. Many I've talked to who have gone through chemo have shared that they have had similar experiences. Most professionals attribute it to all the meds and steroids they pump into you before and during the chemo time. I am not so unique it seems because I seem to be following the same pattern. 

I did just step back from some of my work schedule this week as the nausea and fatigue does tend to linger. It was a truly difficult decision, and I am struggling a bit with the guilt of not being able to keep on top of everything. All of our clients have been amazingly supportive though and that has made putting myself first a bit easier. 

The doctors have prescribed several meds to help mitigate the discomfort of this process. I am really grateful for that. I have three different nausea medications and two medicines to help with my esophagus pain from the radiation. 

So I guess this is a good place to stick in info on the whole radiation thing.  I go to radiation daily and will for 28 total sessions with a few days off in there for the holiday closures. The daily process itself isn't that big of a deal. My first appointment they took a lot of measurements and scans. They also marked my chest and sides so I can be lined up each day in the same position. 

I did inquire a bit further about this part because ya know, how do they know they are really in the same spot each time??? I mean have vital things all around my esophagus and I did have to sign all the waivers and acknowledge all the possible things that could happen. It seems for my specific radiation; it emits through an x-ray. They actually line me up not only on the table but then also verify with the daily x-ray using marked bone positions as a guide to ensure it is given in the same area each time. And, I learned that the actual radiation is emitted from the x-ray in a beam and that it disperses immediately when they turn it off. 

(This is one of the three machines the place has)

The process is fairly simple. I arrive at my scheduled daily time which is actually 730am! Yea that is early to me too! You lay down on the table and they align you then the machine kinda folds in around you. The laser comes on and then it makes a humming noise as it rotates around you one direction, then it pauses and goes back the other direction. The whole thing takes about 10 minutes maybe even less. I usually spend the time praying...and trying not to move. I have always been known to try to push the line and well every time they get me lined up, I have such the urge to just wiggle around lol 

Thankfully I have developed some self-control since becoming an adult and I manage to hold still just fine. It also doesn't help that they pipe in music in the rooms. The ones with the best beats seem to come on when I am particularly wanting to move too. Of course, it only takes a moment to imagine the scene from the techs position to keep me still in those moments lol 

Thursdays and Fridays

These are two of the worst days weekly for me. I stop one of the nausea medicines on Thursday, so it is a bit tricky to manage the nausea and I am usually quite tired most of the time. I spend a lot of the time in the recliner, surrounded by the twinkle of all of our Christmas lights watching Netflix.  I am running out of shows to watch so feel free to comment or text me some suggestions lol

(Aren't Christmas lights so cozy? )

Saturdays

So far my Saturdays have been nice. I feel like I come out from under the fog of it all on Saturdays and then just when I am starting to feel better...It is time to do it all over again. 

So, there you have it, that is what I am currently up to each week. I apologize for being a bit quiet, it's a lot to adjust to. 

A special thank you to those who have dropped off soups and protein shakes, sent cards, sent goodies, crossword puzzle books, and magazines, made me prayer shawls, purchased happy mugs that bring a smile, sent encouragement and scriptures through text, and gathered around to pray into this situation over me. It has been so life giving. My cup overflows and I am grateful for each and every one of you!