Tests are physically and emotionally exhausting

I was dog tired when I got home (at 7 pm) from a day of tests yesterday, even though I’d spent much of the afternoon lying down. And I’m still tired today.

The day started with a 2 pm appointment with my medical oncologist’s nurse, who will be my primary contact in the months to come. She told me all about my port and how it works and inserted some little lead or catheter that would be needed later by the PET/CT scan people to inject their dye. Interesting because she missed the port on her first attempt. Hate to think that’s going to happen very often in the future. Apparently the surgeon put the port in a spot where it doesn’t raise much of a bump under the skin. Cosmetically pleasing but trickier for a nurse to access. (From now on, there may be a scab or mark giving her a clue.)

Solving that awkward ‘what to say’ problem

I’ve not yet been subjected to any well intended but painfully clumsy good wishes regarding my illness. Maybe word hasn’t gotten around yet, or maybe I just don’t have that many acquaintances who care. (Or maybe I just have very classy friends.) But I came across an item on Slate this morning that I wanted to share.

Designer Emily McDowell has created some empathy cards of the sort she wishes she’d gotten

The team in Boulder

After meeting with the doctors at the CU Breast Center in Aurora last Tuesday, the next stop was a meeting with the medical oncologist in Boulder on Friday. He, along with the first surgeon I talked with, were among the doctors at the Rocky Mountain Cancer Center’s tumor board meeting on Tuesday (at the same time I was down at CU).

You’ll recall the first surgeon proposed chemo before a lumpectomy, with the idea of shrinking the tumor prior to its removal. The oncologist explained that this would mean starting with a baseline PET scan. After chemo/hormonal treatment began, the efficacy of the drugs and changes in the tumor would be tracked with successive PET scans. If it appeared a particular drug wasn’t working, this would provide an opportunity to change to a different drug or combination of drugs. I could see the advantage

The team in Aurora

Last Tuesday, the 5th, my son picked me up and we headed for my appointment down at the CU medical center — known as the Diane O’Connor Thompson Breast Center at the University of Colorado Cancer Center in the Anschutz Outpatient Pavilion (AOP) on the UC Anschutz Medical Campus in Aurora. Not sure what its call name is among employees. Maybe just the Breast Center.

Pulled up to the front door on a rainy morning and happily availed ourselves of the free valet parking. I was impressed before I even got into the building. Followed the instructions to take Elevator C to the 2nd (or was it 3rd) floor and there we were, fifteen minutes early. I was greeted immediately and the paperwork started — insurance info first, naturally. All of five minutes. And just as I picked up the clipboard with the questionnaire, we were called back to an examining room. What? No waiting?

They’re called navigators; I call them angels

The feeling of being in control of my life comes and goes these days. Tough for someone used to having full control of every minute in her day. Things are settling down a bit now and it’s hard to remember, much less describe, the two days that followed my MRI on Weds., April 29. Two days before the weekend, two days in which to decide what to do next, who to call to get which records sent to whom, two days in which to make appointments (with five different doctors in two different locations almost 50 miles apart). And while no one was saying it was an urgent situation, nobody wanted to waste time. The first doctor had said whatever decisions were made, treatment should begin within four to six weeks. And several weeks had already passed. But hey, no pressure … 

A belated thank you

This is a very belated thank you to all the people who wrote last week (you know who you are) to express your support and concern after I first reported my diagnosis. The virtual hugs coming from all over the country were about as real as it gets for someone who lives alone and through her computer. I really need to get out more