August 24 (Monday). I woke up in the morning with sore muscles in my neck (this seems to be the norm for about two weeks and I am not even sleeping in my chair anymore!) but otherwise ready to start my fourth round of chemo. I began my normal morning routine. And within thirty minutes I had broken out in a rash from chin to toes! Ugh!!!
I told a friend as I was being driven to chemo the following:
I just want to know if this is a normal side effect. If it is normal to break out in a rash and there is nothing to do other than take Benadryl, then I suck it up and do what I need to do. I refuse to sleep my days away taking even a small dose of the remedy, so I will have to learn to live with an itchy rash.
My thoughts were also on what would happen at chemo. Would it be another round of roller coaster rides? Would it be worse since I already had a rash going into the treatments? How does this port thing work again? Would I see my oncologist or the Nurse Practitioner again?
I will tell you. I was not in a good place. Maybe going back to sleep after I prayed my morning prayers at 3am was not a good idea. Maybe I should have started the day over again at 6am when I was starting to have doubts. But I didn’t and my mom dropped me off at the doors to the center. I put on a smile and told her to enjoy a quiet day at home.
I entered the center feeling down but determined to make it through the day. I was still a little early so I sat with my thoughts on those same questions. I just could not get past those thoughts of dread that it was not going to be a good day.
So it did not go much better to improve these thoughts when I was called back for my doctor appointment. I had a new nurse who is a good nurse but lacks some confidence in her knowledge. I try to remain patient as not to get her more nervous. She has never done a port like mine so she wants to assess the situation. It probably did not help that I still had stitches and glue at my port entry. She was determined to walk me through the process of accessing my port. I was determined to just get it over with without knowing the details. We met in the middle...she talked...I did not listen!
But really, in the end she counted to three and told me to take in a deep breath. I felt a bee sting and waited for the after effects that did not happen. I figure (as a former beekeeper) I have been stung by bees many times. And if a bee sting was just a hard poke with no other effects, then it was a good day. So port now accessed and blood drawn for labs. One step closer but still a lot of worry. Take a deep breath and move to the next step.
I went into the exam room knowing that once again I would be with NP. I waited for thirty minutes. She arrived to say all looked great but had to wait for labs results. I guess she thought she was done, but i had my questions. I asked but she really did not have answers. She told me my neck was probably not related to chemo and she would prescribe Motrin and muscle relaxant. She told me the rash was normal and I could take Benadryl. She would ask about the bulge in my back that was still present. She remembered that she was supposed to order a numbing cream that I put on an hour before my port is accessed to avoid the bee sting. Good thing I have a high tolerance to pain. She was reminded that she was supposed to follow up with genetic testing. I should have a genetic counselor call me to discuss the results in the next week. I also should not have to pay the almost $8000 that was reported to me as out of network by my insurance company. She would follow up with that too.
Needless to say, NP Wendi was trying but not making me feel more confident about my day going well.
Lab results came in and all looked well to begin my chemo. My appointment with her went long, so I was then late to my chemo appointment. Add to that my treatment meds were not ready because they had to wait for authorization. So I started chemo over an hour late.
Now I could have spent my hour waiting continuing a downward spiral. BUT... I got this strange feeling that this was not the right choice. My chemo chair was right across from a wall with pictures of nature transforming...butterflies emerging from chrysalis...and so on. And I realized I had a choice to make. I needed to do what I told my friend and suck it up and find peace. So I turned to prayer as I should have done from the start. Wow! What a difference it made.
By the time my meds arrived, asked some questions of the nurse about the rash already raging all over. I realized that I had the best nurse for my plan to suck it up. Nurse Sweetie is great but she would have coddled me through the day. Tough Nurse was going to have none of that business. I asked about the amount of steroids I would have and was reassured that it was a smaller dose. Then the chemo treatments began as planned.
You know what? It turned out to be the smoothest treatment i have had from the start. AND about an hour into treatment my rash was gone!!! I could not believe it myself. I kept taking selfies of myself to prove it was happening!! AND neck pain was gone and I had full range of motion again!!! Maybe the steroids were actually helping with the anti inflammatory capabilities!!
And even though I started treatment late, I finished on time for my friend to pick me up. I walked out of the clinic feeling great. Meaning no rash and no crazy steroid roller coaster!!! Yay!!! But mostly, praise God!!!
I came home to a quiet house. Dinner was made by my mom. Bless her heart (literally!) because she made an amazing meal that she refused to eat. She had placed herself on a heart friendly diet so she ate in her side of the house to avoid temptation.
Then I had a nice talk with my friend about how to deal with medical bills, insurance and creditors. I would never wish this part of the medical treatments on anyone!!!
Then we gathered for family prayers. Such a joy to have this time to reflect on the day and give thanks as well as prepare for what is to come with God’s assistance. We also reflected on the Apostle Bartholomew (it is the traditional day to remember his dedication to Christ and his death for his faith). which his story is so interesting. It was good to remember that we cannot hide from God when he is calling us.
So I started out thinking it was going to be a bad day, but it turned out to be an awesome day. I praise God for sticking with his foolish child. I know that God has given me what I can handle because he gives me the strength I need. And in the grand scheme of things, I have really a minor reaction to chemo and I pray for those who have it far worse than myself. Perspective is an important role in this journey. Now back out to greener pastures for me. At least my spiritual and emotional health can remain strong. And I have faith that my physical body is growing stronger too!
God bless you all!!
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