December 2015: "The Georges in Peru"

This morning we went to the neurosurgeon's office.  We were there 90 minutes early because the appointment time had been changed twice but I (Allen) never heard about the changes!  At least we weren't late.  The neurosurgeon's assistant saw us.  She thought Amy's wound looked good.  We told her that we hoped to return to Peru soon and she said that we should get follow-up MRIs in Peru and send them to the office.  

Yesterday,  Amy had an appointment with the neuro-oncologist (brain-cancer doctor).  Like the radiation oncologist, the neuro-oncologist recommended that Amy repeat the radiation and Temodar chemotherapy , which is the same treatment that she had in 2004.   Studies show that it adds 3 months to the life expectancy of the average patient with her type of cancer, but doesn't change the long-term prognosis markedly.  This is pretty much what we expected to hear, but we wanted to meet with her for one more opinion.

Probably the most positive result of Amy's surgery has been her cessation of seizures.  She had been having seizures about every 2 or 3 days and now she hasn't had one since her surgery!  Praise God for that!  So we asked her neurologist's nurse when he recommends tapering off seizure medicine after surgery.  The nurse said, "Oh, usually after 2 years!"  Bummer.  We were hoping for sooner.

This morning, Amy had an appointment with the radiation oncologist.  They were very thorough and spent a lot of time making sure that our questions were answered.   We were encouraged when they pointed out that her prognosis is better than most because she is young and healthy and her tumor is positive for the IHD1 mutation, which have all been shown to improve the prognosis.  However, they couldn't answer definitively the question we all want to know, "How much would radiation extend Amy's life?"  No one can predict, of course.  Radiation could make things worse.

This morning we went to the gym and Amy walked 3 miles!  I'm not very good at selfies (I think this is the 2nd one I've done).  She feels a bit unsteady and veers a bit to the left, but really doesn't need me to be there to hold her hand, but we feel better having someone with her for now.  Still no seizures, so that is a big plus!  Her pain from her incision is slowly improving. 

Amy opted to stay home from church today.  She felt like she physically could have gone, but she wasn't ready for all of the attention.  I guess having everyone say, "You're looking great!" is annoying to her.  I've gotten used to it. (insert smiley)  She is a bit ataxic (her gait is a bit unsteady) so she doesn't do stairs unless someone is around to walk below her, so we got everything she needed on first floor and the rest of us went to church and she watched it online (http://cccomaha.churchonline.org) from home.  She's napping now.

Today Amy was moved down to the neurosurgery post-op floor.  It is a nicer room and no room mate, so a nice improvement.  She's feeling better and better and getting more things 'unplugged' including the drain that came out of her head.  We went for a couple of walks around the halls.  In the afternoon the neuro-oncology resident came by with the pathology results.  The pathology came back as tumor, calling it a grade IV glioma.  This wasn't what we wanted to hear, but not unexpected from what we saw on the MRI a month ago.

I was able to pick up Amy and bring her home around noon.  She has a bunch of medicines to take for the next week and an appointment with the neuro-oncologist on the 23rd to see if there is anything that they would suggest as treatment.  Dr. Puccioni came by this morning and said that the post-surgery MRI showed that they were very successful removing the tumor without leaving any large remnants.

6:27 pm. I'm in the room with Amy right now and am glad to report that she is doing great!  She can talk fine, move her arms and legs with normal strength and despite the surgeon saying she would certainly have a hemianopsia, she can see just fine in all directions!  She's hungry and they are bringing up some food.   I'm incredibly thankful as you can imagine. 

If you want to send personal greetings to Amy, you can go to:  http://www.nebraskamed.com/patients/well-wishers and make a card which they will print out and give to her!  Put room 6827 on the form.  (New as of Friday noon)