February 28, 2019

Lady and The Brain: New Year, New Chemo, Now What?

The Holiday Season at our house wasn't the brightest.  Sharing the updated news on The Brain's Tumor and waiting for information on his new Chemo definitely brought down the merry factor. We entered the New Year with high hopes and just as high-stress levels.  
Whether you are a patient or caregiver it is incredibly frustrating to watch the medical/insurance industries wind down during the holiday season.  You feel incredibly hypocritical; you've taken off 10+ days for the Christmas/New Year span but are frustrated that others are doing the same when you need them.  This was especially true while we waited and waited for BCBS and the Specialty Pharmacy to coordinate over The Brain's new Chemo.  We were hoping to start January 2nd (You know when all the partying was officially over) of course that didn't happen.  A Big Thank you to our dear friends, Robyn and Robert, who visited from Virginia for New Year's ~ we had a blast; it was so nice being distracted (aka partying) for a few days.  

The new Chemo arrives and we start the new 6-week treatment.  A quick reminder from my last post:  
  This chemo is made up of 2 drugs.  Lomustine (100mg) is taken only on  Day 1 followed by Procarbazine (150mg) on Days 8-21. This is followed by 3 weeks of blood work and ends with an MRI at the end of week 6.  The Brain was not happy about the food restrictions on certain meats, cheeses, and ALCOHOL. 

The Brain does not like this new Chemo at all.  The first dose was simple enough but when phase 2 started he was miserable. Because I am the ever-devoted wife I thought that a quick trip down to Epcot and Magic Kingdom would be just the thing.  Knowing he wasn't as strong as he has been and Disney requires A LOT of walking the plan was to rent an electric scooter. That was the plan until we saw the price was raised from $42 to $70 so we got the old-fashioned push wheel-chair.  We had a blast and I got quite the work-out. The only "problem" we had was The Brain's alcohol restriction.  We had not attended Epcot's Festival of the Arts before and didn't realize there were food/beer kiosks similar to those at The Food and Wine Festival.  Each time he moaned about wanting to enjoy a beer I reminded him of the months I endured watching him consumer alcohol while I abstained during our pregnancies and nursing which totaled nearly 5 years (to be read with extreme dramatic flair please).  The next day we took a (very) slow stroll through the Magic Kingdom.  Due to the cold temperatures (for Orlando) we were able to hit 5 attractions including his favorite The Pirates of The Caribbean in under 3 hours. While this is impressive we were limited due to his decreasing energy.

I'm telling you about this trip to give you a sense of perspective as to how quickly things change.  We visited Disney on January 19 & 20. The Brain was at work the week before and after. During this time he was getting more tired each day and his left leg was dragging a bit more.  The only upside is that his headaches were minimal.

Once he finishes the 3 weeks of Chemo doses there are 3 weeks of blood-work ending with an MRI.  February 15th was now our target date
Having fun at Epcot's Festival of the Arts
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24 comments:

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