They say knowledge is power. Honestly, at this point, knowledge is just plain depressing. When I read about glioblastoma, I question what the doctors are telling us about life expectancies. Everything I have read point to a prognosis far worse than what we have been told. On the one hand, it pisses me off. On the other hand, I wonder if what they are doing is to try to give us hope, and to offer us us something to reach for.
Mom is planning a super vacation for the family in the Spring. God willing, it will come to fruition! Never mind that both of the kids and Jenna’s future husband have jobs, and that the probability of their taking 20 days or so for a European vacation is a stretch. We are on board, even if the kids can only join us for a short part of it. Nothing economy about this plan! Just hearing her talk about it is fun. She is so excited to do this for us all and her excitement is contagious!
Today was the triple-header day at Neurosciences Center. Neurosurgeon, Neuro Oncologist, and radiation in one long four hour stretch. Only it turned in to 7. You can only imagine how much fun that was. First stop Dr. Schroeder-my favorite guy. I mentioned how concerned I was that instead of getting better in rehab, she seems to be getting worse. He checked her meds-not only has she been getting meds daily for only when she has high blood pressure (her blood pressure today was 82 over 47-they thought the gauge was broken) -which she didn’t have, she also has not gotten any steroids for swelling in the brain. Yeah, that’s why there has been no improvement whatsoever, and instead has been getting worse. Are you freaking kidding me? We will find out who dropped the ball, TMC in not getting the correct medication list or the people in the pharmacy at HealthSouth. I couldn’t even begin to guess. I think this could go either way. Schroeder went bat-shit. Ordered a contrast MRI to see what the hell was going on in there, scheduled 1 hour and 45 minutes after radiation…..which of course turned in to almost 5 o’clock. We finally got out of there a little after 5:30. Rick came and brought us some lunch and hand delivered the prescription to the HealthSouth pharmacy and Tyler spent most of his day off at the clinic. Thank god for these guys!
The good news from Dr. Schroeder was that mom can have a mini cocktail every evening. Mom’s happy about that part. I stopped at home on the way back to HealthSouth and made her a mini Tanqueray and tonic. Bob came right after I got there, we filled him in on our day, and the pharmacist had the misfortune to come by. We all jumped all over her about what in god’s name is going on. Bob may be the calmest person on earth, but not today!
Tomorrow, and I would guess most days during radiation while at HealthSouth, will be Physical and Occupational therapy from 8:15 through noon, then leave for radiation a little after 1. Probably back between 2:30 and 3.
What a day.
Thank you Bill! I will definitely pass along your kind words!
I’m an active member of the 306th Bomb Group Historical gathering that traveled to England this summer and was delighted to meet your mother – we had wonderful conversations around breakfast the days at the Arundel House in Cambridge. She reminds me so much of my own mother. That said, I want you to know that my wife and I and our church are praying for Charlotte and your family. My own family was touched by this exact diagnosis many years ago with my mother-in-law. It is a hard journey both for those diagnosed and the family who cares for and supports them. Our hearts go out to you and to Charlotte. We were so hoping to deepen our friendship at Salt Lake in September. Please give her my greetings (I’m the guy who is a Lutheran Pastor and who tried out my best German at breakfast greetings each day). God’s peace and strength attend all of you in these weeks and months ahead. – Bill in Redding, CA