Krys’s Story

Site created on December 29, 2020

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Newest Update

Journal entry by Krys Robinson

Hello everyone,

I am feeling a bit better so it's time for an update.  The first round of chemotherapy is done. We went to Rochester on the the 14th as we had a lot of appointments the night before Chemo. We met with the oncology team and discussed the results of the CT scan we had to do before we could start Chemotherapy. The tumor has continued to grow and quite a bit in all directions actually. It is now blocking the ureter flow from my left kidney so there is some backup, but not enough to cause issues yet. They are keeping an eye on my labs to be sure it doesn't become toxic.  The growth is causing pressure on my pelvic bones which is causing the pain in my right hip. They are glad we are not going to wait any longer.  So after all the tests and labs Thursday night I was in pretty rough shape so we stayed at a hotel overnight as Chemotherapy was right away in the morning. 

On Friday January 15th we did our first round on Chemotherapy. It seemed to go well and they were able to get the IV in right away. They gave 3 meds first to help with any possible reactions and to prevent  nausea and vomiting.  Then they gave me the 2 different Chemo  medications which took about 5 hours total in the chair.. I felt good after which they said I would.  They gave me a bunch of meds for at home and we met with palliative care  before heading home in the snow storm. 

Saturday I woke up in extreme pain. My entire body hurt to the bones. My mouth was so dry I could get anything  to keep it wet. It felt on fire and like the top layer of skin in my mouth was peeling. This lasted for 4 days. I couldn't eat or drink anything without throwing up. Even the smell and sight of food made me queasy.  Wednesday night I started to feel somewhat better but woke up Thursday morning still sick. We had to got back to Rochester and see the post operative team. My large incision still isn't healed around my bellybutton. There's no infection but there's a 1 inch opening they needs packed twice daily. They taught Patrick how to do it and he's been a huge help. 

So now that it's Saturday, I can say a week after Chemotherapy I am finally getting back to ok. I still have this chemical taste to everything  but I'm no longer vomiting and I've been able to eat little bits here and there. Bowl of chicken soup on Friday and bowl of Mac and cheese today. 

So blood work again on the 4th to see if my levels are ok enough to do Chemotherapy on the 5th.  Same day we are meeting with the  social worker,  oncology team and post op team. It's going to be a long day.


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