Getting the Diagnosis

Today Kate and I met with Dr. Reasoner to get the results of Kate’s PET scan. She had gone in for the scan a couple of weeks earlier following a routine appointment with Dr. Reasoner. I went with her for that appointment to give my own impression of Kate’s lapses of memory and to hear what Dr. Reasoner had to say.

Dr. Reasoner suggested that she have a PET scan and a behavioral evaluation by a neurological psychologist. Kate had the scan about 2 weeks ago. On Wednesday of this week, January 19, she had an initial visit with the psychologist. Kate is scheduled to have her evaluation on Wednesday, February 16, at 12:30. She has been told this will take as long as 5-6 hours.

Kate and I have not talked much about the PET scan and the potential results. We both knew what was possible, and I think neither of us wanted to drag ourselves down in worry of the worst news. For the past few days I have had some trouble sleeping and have found myself thinking about how she and I would react if the test came back positive. I am sure that every cancer patient would understand this reaction.

As we went to the appointment, I kept telling myself that we might get good news that the test was negative. That was not the case. Dr. Reasoner presented the results matter-of-factly but not coldly. She said the test did show signs of “early onset Alzheimer’s.” She went on to explain what that meant (the tangles in the brain) and how it can be addressed (initially with Aricept and after a few weeks another drug that has, in the past, been used at later stages of the disease).

Dr. Reasoner told her the average life expectancy for someone who is diagnosed early (the starting part was not and, I suspect,cannot be known) is about 12 years but that she could live much longer. She also gave a few examples of people she had known whose quality of life was good even with the memory loss. She is especially interested in Kate’s behavioral evaluation. That evaluation will determine whether the disease has affected other things than simple memory.

Kate handled the news with a good bit of control and later in our meeting, she said that in some ways, she actually felt relieved to know what was causing her memory problems. Her greatest concern is having to depend on family or professional help to take care of her personal care, something that she feels could be required for a long time should she live as long as her parents.

I tried not to give in to the emotion I felt on receiving the news. At one point as we were discussing Kate’s care in the future, I reached for her hand and tried to assure her but choked up. Dr. Reasoner gave me Kleenex to wipe my eyes.

After leaving Dr. Reasoner’s office, we went to Casa Bella, a restaurant that holds a special place in our hearts. We were introduced to it in the early 70s by one of Kate’s best friends. In the last 10-15 years, however, we have eaten there more frequently. We came there after both of our dogs died. She got her veal piccata and amaretto cheesecake that she loves so much.

We talked briefly about having to decide when to tell our children and friends. We both agreed that now is not the time. We know that once other people know they can’t help but treat you differently, and she doesn’t want that. We are just going to take it a day at a time right now and trust that we will know when we should let it be known. This is going to be very hard for both of us as there are people we might look to for support, but there will be a time for that down the road, hopefully a long time down the road.

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