I haven’t written about my health in a bit. It still surprises me when people still don’t know. A well-known journalist yesterday. Called to chat about a comment by E Galy, Port of Spain, one of our serial letter-to-the-editor writers.
“The PNM has no control of homosexuals.” I (or someone else) am doing something right.
Health, though, is largely bad news. I’ve had two treatment failures. And yesterday, I got rejected by an investigational new drug trial that seemed a really promising third shot.
Today’s one of those days you just want to have a good cry, with no answer when earnest loved ones ask what you need.
Study co-ordinator Nurse Alice was gratingly ingratiating. After we’d spoken by phone, she’d pre-emailed the 25-page consent form. As I signed in multiple places, at the voluntary section allowing the hospital to use my tissue in future research, she joked about the Henrietta Lacks clause, the African-American woman whose cell line, HeLa, has become legendary. She was a 1950s Johns Hopkins patient, and no consent was obtained at the time to harvest, culture or use her cervical cancer cells, or any agreement about commercial profits generated. It was a quarter-century later that her family first became aware of their use. Oprah Winfrey produced and starred in a 2017 film about the family.
Next up after Alice was my echocardiogram, an ultrasound of the heart. For a science that’s about revealing information through images, the radiology department has the worst signage. I got lost twice before unusually unfriendly young women redirected me.
Their junior technician, hesitant, had her colleague review her painstaking work — she’d missed a few corners. Then it was across the bridge, back through the parking lot, to the cancer centre (where I wouldn’t be surprised if a doorknob were named for a donor).
Phlebotomy. She drew at least six vials of blood, all the way up to the top of the test tube. Two separate containers to go pee into. Downstairs again, at the back; for an ECG.
As she placed each of the ten electrodes in their different locations, I chirped: “How do you know where to put each one?”
“They train us.”
I looked for that.
Cocked off in the lobby with my Popeye’s frozen lemonade – hydrating – I answered the phone.
It was Alice. The trial lead doctor wanted to speak with me. Oh, a videovisit? I’d done those before. No, she’d call me on my mobile. Alice called again, with a phone number and passcode for me to call. I asked again; she seemed to be new at some of this technology. Indeed she was, just back in the job from an assignment elsewhere, it appears.
I called the number. It didn’t work. I called her back.
Then the doctor phoned. She really wanted to see me.
I’m here, in hospital. Nothing to do in the two hours before my CT scan.
She’d sent me a MyChart invite to a videovisit. Oh, yeah, I just now saw that and logged in, but no one was there. She’d meet me there. Okay: the end of that roundabout path.
Oops: I’m in the lobby. Got to untangle my headphones and put them on.
We started. And I couldn’t hear half of what she was saying. So we talked through the phone, seeing each other on the video.
She worked fast. What questions did I have? She was clear in her answers.
What was my main concern? Pain.
Before I could object, she’d leapfrogged over the palliative care team I’d spent weeks building a relationship with, rewriting prescriptions, proposing insurance workarounds. Very hands-on.
I headed to another radiology unit for my CT scan, final event of the day. As quickly as I got there, Alice appeared.
We’re given these blue “patient-locator” clip-on devices; they’re creepy. She wobbled across the floor holding a printed schedule of my next appointments.
She had a new one for me. The lead doctor wanted me seen today. She’d squeeze it in before the scan.
Wow, these people are hard-sell. She lingered, making conversation. What was my videovisit the next day? With Jenna, how-do-you-say-her-last-name? You’re working in Baltimore and can’t do an Italian last name! Who is she? What’s the point of the visit? My oncologist…a relationship I want to keep.
Half an hour later, on another floor, headed to the surprise consult she’d scheduled, Alice appeared again. Pulled me to the empty centre of the waiting room floor, grappling two pages of my lab printouts, told me my pancreas enzymes were off the chart (of the normal range), sorry they couldn’t offer me treatment; was there anything else she could do for me? Go through with the scan; it might help Jenna explain the numbers.
My videovisit’s about to start. Jenna’s busy, sometimes late. Waiting, recalling all the loving folks asking what they can do, I can’t suppress my Rudderish impulse: For now, jook a safety pin under Alice foot.