Progress?

It looks as if the tumor is making a bit of progress, and not exactly in my favor.  On Thursday evening I sent an e-mail to Dawn, our Johns Hopkins Physician Assistant, seeking confirmation that my MRI CD had been received.  I pay attention to walking the line between annoying and advocate and ten days after “send off” seemed safely on the advocate side.  I expected an answer on Friday, but an hour after pressing send, Dawn responded: 

“Yes, CD was received, uploaded on 2/16 and read today. Prel read is of stable disease, though measurements are up just slightly. I will try to have Dr. Rigamonti review this Tuesday, 2/22 and get back to you. He has been out of the country and has a large volume to review. We do not need to do anything urgently but will give you our best recommendation for timeframe to consider treatment or another MRI.”

So, I should have some additional information and guidance next week.  Meanwhile life is always busy and interesting and I sometimes forget that my brain is ticking.

With love,

Karen

The Results Are In

Monday’s MRI shows no detectable tumor growth.  Short of the fulfillment of my magical thinking (it could have shrunk or disappeared) this is good news.  Now we have to send the CD and report to the brilliant Johns Hopkins doctors so they can read, interpret, and make recommendations.  I assume they will advise me to continue the watch and wait routine.  Unlike when we left there in disbelief in mid October, it is a recommendation I can now accept.  On difficult days I just want to be back to regular old pre-tumor days.  Fortunately bad days are infrequent and watch and wait is  acceptable. 

Monday was an interesting exercise in rapidly readjusting expectations.  I had rescheduled and double-checked to make sure the MRI technician on duty was the technician who did my first MRI.  When I had my blood drawn the week before, I made sure the nurse understood that the results needed to be at the Imaging Center by 11:00 Monday morning.  I watched as she wrote special notes on the vial and file.  Right.  As you may have guessed, neither of these two things happened.  Oh well, more small experiences in conceding control.   

Thanks to all of you who have been watching and waiting with me.  I know I have not gotten back to each person who asked me to let them know the results as soon as I heard.  Somehow, although I am very grateful that this tumor is only an Acoustic Neuroma and not something much more dreadful, it still sometimes wears me out.  

 

With great appreciation to all of you,

Karen