A New Phase

Comfort Mode

Thursday, 27 January 2011

We met with Dr Chadha, our oncologist twice this week. Once for a routine office visit, during which he explained that he has done everything he can to treat the cancer and now we will just have to let it run its course. It appears that there is probable cancer recurrence in both of the surgery sites. We are now in a comfort mode, during which we will simply try to make Michele as comfortable as possible. The second visit was for an emergency infusion of fluids because Michele was dehydrated. Yesterday she was unable to keep anything down--she regurgitated everything she ate or drank.

This week our psychologist, occupational therapist, speech therapist, and physical therapist all said that they could no longer do anything to improve her condition and saw no value in continuing their treatments.

Michele’s condition is rapidly deteriorating. Muscle control for her entire right side continues to be limited and her right arm is almost paralyzed. There seems to be no improvement of her partial amnesia. Michele is practically mute--she can only occasionally give one-word answers to questions. Even her once emphatic “NO!” is gone. At times, she seems to understand what is said to her, but often she only looks at the speaker with a blank stare. Phone conversations are impossible.

So, next week Michele will become a hospice patient, but we plan to keep her at home. For the dehydration treatment, we were considering an ambulance to the emergency room, but she made it quite clear that she did not want to go back to the hospital under any circumstances. Fortunately, we were able to go to Dr Chadha’s office for the infusion.

　

RKS

CSF Problems Resolved

CSF Problems Resolved

Wednesday 19 January 2011

We had a new MRI and then met with Kit Fox, our surgeon, this week. There seems to be a recurrence in the original cancer area, which we will let run its course. The cerebrospinal fluid (CSF) problem seems to have resolved itself, just as Dr Fox expected.

CSF surrounds the brain and the brain essentially floats in it. One of the side effects of the October surgery was that Michele’s brain was producing too much CSF. . In November, Dr Fox drilled a hole in her skull and inserted a catheter to drain the excess fluid. That obviously could not be a permanent solution, and with the infection and other complications and reasons, our only option was to let it work itself out and let the brain balance the production to its needs.

In achieving a balance, CSF built up in the space between her skull and her brain. This caused pressure on her brain and compressed and squeezed the brain. In one MRI, one side of her brain was compressed by 16 mm (5/8 inch.). The excess pressure caused the cavities (ventricles) in the center of her brain to nearly collapse, shifted the center line of the brain by 6mm (¼ inch ) and pushed Michele’s brain against her skull on the opposite side of her head. For the past two months, the area of excess CSF has not been stationary, but has moved to different parts of the brain. Besides giving her a terrific headache, it caused stroke-like effects. Some effects were transient, but others have been more persistent.

Michele has partial amnesia for some events since 1990 or 1995. She seems to remember most pre-1990 events and people. She remembered James, an editor at the university paper in 2008, and even identified him by his handwriting on a card, but isn’t too sure who I am. She remembered our wedding reception in detail including who attended, except for one detail: who she married. However, I am not too concerned, since she has proposed to me since we came home. At least I know the truthful answer to the age old question: If you could, would do it all over again and marry me?

Michele continues to have great difficulty speaking, but she seems to understand most things said to her. She generally gets frustrated when trying to socialize in a group of over three people. She likes to have visitors in the mornings between ten and noon and finds former students particularly enjoyable. She has limited endurance, so a half-hour visit is about right. By attempting to limit visitors to four a morning, she is usually booked several days in advance, so it is advisable to phone ahead.

She has some muscle control issues on her right side and very limited use of her right arm and especially her right hand. Mobility is a challenge and she uses a walker inside the house and always uses a wheelchair when going outside the house.

We have had a parade of therapists assisting in Michele’s recovery--as much as 10 hours a week. Progress has been slow, but measurable.

Throughout all of this, Michele has, as you would expect, remained remarkably positive and we are working through all of the issues with help from our friends.

RKS