Part 2: The Lows

Scheduling Effort and Side Effects

(If you haven’t already, read Part 1 first.)

When I meet with a doctor in any context, there’s usually a checkout process. It usually involves determining my copay, settling my bill, confirming any prescriptions, and scheduling a follow up appointment. It takes about five minutes.

The last time I met with my gastroenterologist, I needed to schedule seven different appointments.

1. 3 more infusion appointments with 1 cancellation and reschedule.
2. 2 follow up appointments.
3. 1 six-month colonoscopy. I’m up to the six month schedule now from the annual schedule, at least for the first year on this medication.
4. 1 lab appointment where they will draw approximately 10 vials of blood and ask for various other things my body makes.

I may have spent more time with the desk assistant making these appointments than I did talking to the doctor. Anyone within ten feet of our conversation knew exactly what appointments I was scheduling and why. I’m probably fine with that, but it was still awkward, like entering your PIN into a cash machine in a nightclub when there’s a large crowd around you.

Caregiving is Scheduling

When my father was undergoing cancer treatments my mother became his caregiver. Throughout our childhood my mom managed everyone’s healthcare appointments, but this kind of support is on a different level. She went from putting in a few hours a month on phone calls and picking up pills to being a full time personal assistant. My mom was diagnosed with cancer after my dad’s death, and at first she was her own caregiver, with occasional help from coworkers, neighbors, and my brother and me. She carried around a few massive binders with all of the details related to her chemotherapy schedules, emergency protocols, insurance requirements, and clinical trials she was undertaking. Upon having a stroke at her desk, she required someone to stay with her nearly every evening until her death, and the person on rotation handled all of this paperwork and scheduling.

I am 42 years old and in good health with the exception of the obvious. I don’t need someone to do these tasks for me, but man, this crap is time consuming. I’m unable to rely on my memory for how all these appointments relate to one another. I use Google Calendar and to-do lists religiously to prevent missing important appointments or scheduling dependencies incorrectly.

I’m also scheduling a year’s worth of infusion appointments in advance. I tried to reschedule one appointment, and it was a challenge. This process has several constraints.

1. The timing between doses is very specific.
2. It takes about three hours to infuse and is only administered by a nurse.
3. There are a limited number of seats available (2), days per week it is given (4), and hours of the day it is given (8am to 3pm).
4. The doctor’s and insurance company’s preference is I only go to a single location even though there are others available.

Given all these constraints, one would assume that they would give some thought to making it easier to manage these appointments. One would be mistaken. As someone who considers the user flow of processes regularly as part of my job, I believe this requires a lot more effort than is really merited. A simple system showing available spots with the ability to automatically select the next available opening, accounting for the intended duration between doses, would be a welcome and not too difficult improvement.

Then there’s the mountains of acne.

I don’t feel nearly this sassy.

Within two days after seeing the dermatologist for what I thought was the last time, I developed acute acne, nearly everywhere. I don’t look dissimilar to the trill species from Star Trek Deep Space 9, but I don’t feel nearly as sassy as she seems to be. Thankfully it’s not terrible on my face, but it’s clearly visible. It is however unrealistic for me to go swimming without a shirt on, but that’s easy enough. It’s just deflating to be presented with another body image challenge; one that I thought I was done with after puberty. But I can manage this. Maybe it will improve as my body becomes more adjusted to the medication.

I probably will have to see that dermatologist again, after all.