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May 26-Jun 01

This Week

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Hello everyone,
Over the past month or so I have been working with my doctors to create a new plan. I have kept it mostly to myself, because I don’t like to talk or write or text about it until the plan is more complete.  Things change so much, if Inshared every update I would be on here or texting people every day! 
Essentially my last scan showed no progress (sad), so we needed to come up with a new plan: either live my life to the fullest or go for a clinical trial. I opted for giving a clinical trial a shot. In order to do that there is a lot that go into it. First off, I will be working with a different hospital other that my Dr at Vandy recommended which specializes in clinical trials and research. It adds a layer of complexity, but I was willing to look into into into it. So First off, they have to see if there is a good study that is well suited for me. Secondly, I have to agree to the schedule, treatment type, and we have to run every test/procedure/lab in the book.  Then, we have to see if they’ll accept me and schedule a start date. 
Not going to lie, it was a lot to handle mentally. On top of that, my pain was not getting better.  
Well, finally we are moving forward. If you have read any of these entries in the past, you know that I feel much better when there are plans in place.  
So, my mom is coming into town tonight and the party starts tomorrow.  By party I mean biopsy tomorrow, lab work on Wednesday , treatment (which is an immunotherapy) and a sleepover at the hospital is on Thursday, and I get one of my chest tubes out on Friday (yay).   I obviously have a packed week, which is why I am so happy to have my mom here.  On top of that, Hailey is supposed to come this weekend if everything works out as planned! 
Eventually treatment will be every three weeks. Additionally, lab work is twice a week. Side effects shouldn’t be too bad, although it’s a phase one trial, so we won’t really know until we’re started. 
I just hope we see some stability or improvements along the way. 
Right now, pain and shortness of breath are my biggest issues. Fingers crossed we see some improvements in those areas. 
Wish me luck- here we go!!

Xoxo Kirsten  



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