September 30, 2022

This has been an up and down and eventful week.  Gaye was feeling "off" in that her footfall was awkward and her left hand was not grasping well.  Phil (Lynne's brother-in-law who is a retired radiologist who read Gaye's MRI) noticed that there was quite a bit of swelling in her brain from the secondary tumors which was causing shifting in her brain and suggested we talk to her oncologist about taking something to reduce the swelling.  Upon talking with her oncologist he agreed that this could help and might relieve some of her symptoms and put her on a steriod.  His hesitation was that with steriods there are concerns because they can and do cause unfavorable side affects (interfere with sleep patterns, large increases in eating urges to name a few and there was no guarantee that this would relieve her symptoms).  So Gaye began steroids' on Sunday (one Sunday night and then 3 for the following day).  The oncologist checked in with her on Monday to see how she did and she reported no side affects so far.  The second night was different were she did not get any sleep at all - wide awake until 4:00 in the morning.  Ugh!  So the dosage was cut back and she actually took her anti-nausea pill as well that evening and slept fine.  The upside of all of this is that she did feel much better - "almost normal" in her words.  So, she will continue with the steroids' and monitor her symptoms and report immediately to her oncologist if her symptoms return or she experiences something new.

We also visited several senior community's and are working on a plan if she should suddenly need extra help.   This will feel good to have a plan in place.  If we do, then we can relax and enjoy her living in her current community until that time comes.  Like doing puzzles and walking her area.  Very pretty.

Oh, and she also got a call from UCLA's neurologist and researcher on Thursday who will consult with the oncologist and Gaye and inform both of them if there are any clinical trials that would be available to her.  He asked many questions and shared with us all of the MRIs that show what Gaye's brain has been doing.  It was helpful to see the actual pictures and not just a radiologist interpretation - which was a bit gibberish to us.  He is requesting more information about her tumor make and was rather positive about one of her markers that often is a positive sign for longer term survival rates.  He suggested cutting back even more on the steriod dose because he too was concerned with the side affects.  So she will take less and keep everyone informed if by doing this her symptoms return or if she is experiencing side affects.  He also wanted her to continue her chemo treatments and so Thursday night she returned to her 5 day regimen of oral chemo with 3 weeks off.  He felt that she needed at least 3 rounds of the Temodar (chemo) to see how affective chemo was on interfering with the tumor growth.  

So, lots of pills to keep track of but she is hanging in there. And lots of calls and teledoc appointments from doctors, nurses, nurse navigators and clerical staff....it is good to have both of us trying to remember who is who. And the best part of this week is that Kevin is coming down and will be here for the weekend.  It will be a crowded and fun little cottage.  We are looking forward to his visit.  

Gaye - an enthusiastic ping pong player at 8 years old in the patio of 881

(thinking this was Andy's birthday)