When Susie was first diagnosed with brain cancer, back in January of 1999, I felt it was important to keep a journal and take notes with each doctor visit. I would read these notes a week before neuro-oncology appointments. Also note taking was something I could do/ control, as there was so much in the cancer journey that was simply out of our hands.
(National Mall & Lincoln Memorial)
Today being the 18th anniversary of the 9/11 terrorist attacks, my mind always gravitates to where we were on that fateful day in 2001. Specifically the thoughts and feelings we experienced while we were getting ready for a three month check-up at MD Anderson and worrying about friends and family in and around New York and DC. Below are my notes:
Information:
Doctor - WK Alfred Yung
Family - Susie Wilson, Guy Lipof
Date - 11-SEP-2001
Background:
This is Susie's 7th three month visit, since completing treatment
(surgery, phase 2 trail w/ TMZ + BCNU, and radiation).
Notes:
Today, like the rest of the nation, Susie and I sat in shock
regarding the catastrophic events against the World Trade Center
and the Pentagon. Our thoughts were focused the entire day on
the people of New York and DC. We learned about the attacks
while in our Rotary House room, getting ready for Susie's cancer
follow-up appointment. We were happy to learn by mid-day that
my brother (NY) and our brother-in-law (DC) were both unharmed.
As to Susie's follow-up, we met with Dr. Yung and he said there
has been no growth and that Susie is ready for the next phase
(i.e. decrease follow-up frequency from every three months to
every four months). As to other items at the appointment:
- scans (no growth)
- meds (none)
- physical exam (strong)
- neuro-psyche exam (took test yesterday - Susie feels she did
not do as well as before, mostly because she is upset regarding
Kim Arriaga's death from Astrocytoma recurrence)
Last item to mention, we talked about my Uncle Joey and my Dad's
involvement in the National Brain Tumor Society's bike for the
cure. Dr. Yung was impressed and mentioned much of clinical trial
research is funded by donations. We also discussed Kim Arriaga's
fund and how donations are often used.
Overall positive appointment. With the news of the tragedies in
NY/ DC and Kim's passing, we did not feel like celebrating.
