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May 05-11

This Week

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I am officially down to my last week of treatment! I have completed 24 radiation therapy fractions. I have 4 left to go. 

Chemo didn’t go as planned! They ordered the Mitomycin C push and then instead of the 5FU chemo pill or the 5FU chemo ball, they would do that as a push as well because it has a short half life. Well come Wednesday again, I started to develop the chest pain and jaw pain again. It would come and go. 
I let them know at a management appointment for radiation and they contacted my medical oncology team and wanted me to go to the ED but I didn’t want to do that because I knew it was related to the chemo and would be the same ECG, bloodwork and holding me for 4 hrs. So the next morning for chemo I show up and tell the nurse the same stuff because the pains came back again. I sat there for 45 min. I asked for my fluids and then they called my provider. She (the nurse) didn’t want to give me my fluids either and blamed my provider. 

Anyways, I left and messaged my provider to verify if my standing orders for fluids as needed had been changed or not. To which they had not been changed. They did an evaluation, ECG, Troponin and D-Dimer and all was good. No heart attacks! Another reaction to the 5FU. So we have discontinued the 5FU chemo for yesterday and today. 

So just 4 more radiation fractions and I will have completed my treatments! Radiation burns are real. Intense and horrid. They have given me vinegar for vinegar soaks, aquaphor, vanicream, etc. They have prescribed me a topical cream for the burns with open sores. It is miserable and probably the most painful part of this. It is very similar if not worse pain of what I felt with the infection in my fistula and abscess. I have a very high pain tolerance. I just keep telling myself that I am almost done! 

I had an appointment with colorectal surgery team and will have 2nd opinion next week. Ultimately we will wait to see what my scans show before we determine what the next plan is in terms of the ostomy.  

I am certain this treatment is working and God is healing me. The very first week of treatments when I would lay on the table it would hurt just laying there from the pressure on the tumor. I was also able to feel a few more nodules of the tumor that had grown from the time I had finished chemo while I was pregnant with Henry and I can no longer feel those or that pressure when I am on the table.  Praise the Lord! 

My dad made it down here yesterday afternoon. Rob made it down this morning. Halle made it down tonight. I just can’t describe how happy it made my heart for us to be all in one room tonight. We will celebrate Christmas at Tosha and Kyle’s. 

It seems so surreal that in about a week I will be able to head home! This has been a very long journey but man am I so excited and looking forward to going home soon!! 

Thank you so much for all of the continued prayers, cards, messages, calls and texts! I truly am so blessed and don’t know what I would do without all of you!! I hope you are all able to celebrate Christmas with your loved ones and have a safe and happy holidays! 

Merry Christmas and God bless you all! I appreciate you all so much! 

Sending you all my love! 

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