Week 11 Motor Deficit

8 Feb

This week started off with a visit to see our local hematologist and neuro-oncologist.  Susie’s Platelets remained above 20k, but her hemoglobin continued to go down.  It ended up falling below 7, so Susie went in on Wednesday for a red blood cell transfusion.  They did two bags, which took almost five hours to complete.

As to our session with Dr. Groves, Susie is done with radiation and chemo.  He feels the treatment was effective, even though Susie stopped with one week remaining (27 out of 33 radiation treatments, 5 weeks out of 7 weeks of chemo).  Because of how she is having challenges recovering platelets, temozolomide and its family of drugs are no longer on the table for fighting brain cancer.  So, the recommended plan is to have follow-ups every two months, including a follow-up at MD Anderson the week of 24-FEB.

1995-FEB-04_SusieStairsOn Tuesday night, we celebrated our wedding anniversary.  We have been married for nineteen years, have two wonderful children and have enjoyed adventures all over the world.  We celebrated with dinner at Asti Trattoria in Hyde Park.  We love their calamari.  Pearl got her usual, linguini and clams.  On our way out, the restaurant gave us a tiramisu to take home for celebrating our anniversary.

Unfortunately, things started going a bit south on Thursday evening/ night.  Susie seemed to lose control of her movements (kinda like stop motion) and was having a challenging time with common tasks, like eating, drinking… Her speech was also slowed with a bit of aphasia.  Susie woke around 2 am like the episode did not happen, i.e. in full control of her motor skills and speech.  We met with both the hematologist and neuro team the next morning.  The feeling is that Susie was crashing because we had reduced both her IV and pill steroids this week.  So, we increased her dexamethasone (pill steroid) to 2mg twice/ day and her anti-seizure meds to 1000mg twice/ day.  Friday night was similar to Thursday night, and Saturday is looking like a repeat.

The likely cause for this experience is still unknown; however, her MRI showed some new white spots in it.  It is unclear if the white is related to cancer growth or radiation necrosis. They did not show blood, so not a tumor or brain hemorrhaging.  We hope to have a determination by end of the month and a suggested path forward.  So, now we have two primary activities to stay focused on; motor skill and blood recuperation.  For now, Susie is enjoying a home cooked brownie from her mom.

Guy Lipof

Accomplished Engineering Executive with deep consulting and sales expertise in healthcare and life sciences, particularly in oncology, driving business strategy, delivering innovative solutions, and improving patient outcomes. Care partner and advocate for raising awareness about and investment towards Brain Cancer Research, such as Glioblastoma Multiforme and IDH mutant gliomas.

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