Preparing for a full day of doctor visits

Tomorrow (Jan 24) Marcia has a mammogram scheduled for 10:00.  We have to do this twice a year for another 3 years or so until she is cancer free for 5 years.  Based on what Marcia’s surgeon has told us, because her tumor was caught early and it was pretty isolated, there is low likelihood of recurrence.  Aside from the medication she takes daily, breast cancer has not been a life altering event like AD has.

                    

Following the mammogram we have an appointment to see Marcia’s neurologist in New York City.   It’s been about 6 months since we’ve seen been to NYC and we are definitely overdue as a lot has changed.  Marcia’s sister and friends have given me their observations over the last six months.  Along with my own thoughts, there are several things I want to discuss with Dr. Honig.  I’d like to discuss these without Marcia present, but I doubt that opportunity will present itself.

Assuming I won’t be able to meet with Dr Honig privately, and I’m pretty sure I’ll be a complete coward in being honest with him in Marcia’s presence, I wrote down the key points we wanted him to know about.  While my first choice would have been to meet with Dr Honig and discuss this in person, I’m not ashamed of the cowardly approach!

This is what we had put together:

Dr. Honig

In the event that I am not able to speak to you privately, or have the courage to be completely honest in front of Marcia, I thought this might be the best way to give you the best, most current information on what we (family and friends) have seen in Marcia since our last appointment with you in July.

I think you know that coming here creates anxiety in Marcia.  Conversely, I’m glad to be here, and need to know what I need to be doing to care for Marcia and keep her safe.

Observations:

                   

·         Her speech you will certainly see for yourself.  Communication is very difficult.  We’ve started to try “talk’n photos” on an iPad, and using laminated cards where she can point to things.  She has been open to trying both, but she really hasn’t’ used either to this point.  She’s increasingly quiet.  When she does try to speak, she has a lot of difficulty getting her message across and will give up if her struggles are too great.

·         Myoclonus episodes occur with greater frequency and severity.  Sunday she spilled coffee on her lap (not the first time).  They have also affected her willingness to even try to communicate.  Our daughter is very concerned about how often they occur and has seen her drop items in grocery stores and around the house.

·         Marcia gets out of the house every day for a couple of hours and is still teaching classes 3 days/week.  Class size is smaller, but very loyal.  We are all concerned about her being alone in the house, which happens from 3 – 5 hours/day.  Mostly she watches TV and naps, but will do laundry and other things to keep her busy.  However, she has had a few falls that we are aware of (she hasn’t told me about any of them) navigating stairs.

·         She fixes her own breakfast (oatmeal) and lunch (peanut butter and bagel).  Both require working the microwave, which she can still do effectively.  Repetition here seems to help.  She also operates the coffee maker (K-cups).  She’s completely reliant on others for dinner, not that she couldn’t warm something up, but she’s comfortable letting others take care of this for her.

·         She manages her own medication.  Again, very deliberate in doing so.  Takes her a lot longer to do than it should, but she still gets it right.

·         We have seen basic motor skill deterioration.  She doesn’t put make up on correctly (when she puts make up on), has toothpaste on her lips when picked up by friends, and asks for help occasionally putting on ear rings, etc….  She asked for help getting ready for a party where we had to get “dressed up”, and was especially cautious walking in heals.  She’s always very careful going up and down steps, and is aware of her increasing challenges in this area.

·         The iPad, mentioned above, isn’t likely to be a long term solution for her speech.  She can’t turn it on or off without help.

·         Marcia has lunch with a friend every Friday.  Her friend says Marcia is now eating her salad with her fingers as opposed to using a fork.

·         Finally, she’s amazingly strong and trying to stay positive.  But she’s feeling lonely since we can’t communicate very effectively.  She tells friends we don’t tell her anything about what’s going on.  She might be correct in that it’s just more exhausting for all of us to carry on a conversation.  On the other hand, I tell her everyday what we have going on with activities and who is taking her places.  Maybe she doesn’t remember….