Wife Wednesday Episode 3
If Only There Was
a Better Way…
Three calls. Two trips. One predictable weekly need. And a solution so simple it shouldn’t need to be said out loud.
[ Embed reel here after publishing ]
Dead dancing in their graves
Bones covered up by suits
As the visible scars, they multiply
Kiss it goodbye
Too stubborn and I’ll destroy
If you’re reading this and you haven’t followed yet — that’s the ask.
I am working to turn the light on the inside of healthcare. Not to burn it down, but to get enough people interested in making real change — so patients spend more time living life and less time being tossed about the shores of a system that should be centered on them.
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🩸 Help Melody directly: Support Melody — parking, prescriptions, the things that add up quietly.
Sunday night. I know what I know.
It is 11pm. I am sitting in a chair that is not mine, in a room that is not ours, beside a bed where Melody is wrapped in wires and probes and the particular hum of machines that are supposed to tell us something useful. Sleep study night. She hates mornings and this starts at 5am, so there’s that.
I have my phone, a lukewarm drink, and the week already laid out in my head the way it always is on Sunday nights — because that’s when the AuDHD project manager takes over whether I want it to or not. Labs Monday. A transfusion sometime this week, because it is every week. Pulmonology Thursday. Dialysis every other day in between. And I have a bone marrow biopsy Tuesday as part of a research study.
The calendar looks manageable. It always does on Sunday night.
Monday. The number we already knew.
I already knew before the labs came in. But this particular day the important number didn’t arrive until after 5pm. Sure enough — she needs a blood transfusion. I waited until after noon on Tuesday to call, because that is always the question: have they seen it yet? Are they working on it? Do we need to call to schedule?
Oncology said they were working on it. Three calls from the infusion center later — scheduled for Wednesday.
Three calls. They moved it. Called back — they bumped someone to get her in. To their credit. The third call came while I was locked into a concentration task and also in the middle of a meeting with a honey customer. Earlier slot. Adjust everything. Again.
One treatment. One predictable, recurring, weekly treatment. Scheduled. Known. And it is always a scramble.
Here is what I want someone to explain to me: dialysis has a standing day. I plan around it. I know three weeks from now what Tuesday looks like because of dialysis. The transfusion — which is just as predictable, just as recurring, just as necessary — requires a phone call, a wait, a callback, another callback, and three days of calendar Tetris every single week.
When a doctor schedules a follow-up, they schedule it. They don’t wait until the follow-up becomes urgent and then try to work you in. So why is a weekly blood transfusion for a cancer patient treated like an emergency every time?
Two of the last transfusions went smoothly because the system briefly worked the way it should. The moment it reverts — here we are again.
The week on paper.
Labs Monday. Medication management Tuesday — added Friday afternoon the week before, great notice. Pulmonologist Thursday. Sleep study Saturday. Sleeping somewhere that isn’t home, with neurodivergence, with the full load that follows Melody everywhere we go.
And a transfusion. We already knew it was coming.
O2 tanks back to every location Monday. Clinic. Doctor. Infusion center. Third trip to the facility for tank exchange this cycle. It would be so much better to get refills before she runs out and have them available for the entire day — but it hasn’t worked out that way yet.
Tuesday. Just too tired.
It should have been three treatments this week. It was two. That’s not a medical decision. That’s a human one. The body has a limit and she reached it.
Ever get to bed late and get awakened much earlier than needed? Or stayed up all night at a hospital and it’s now sunrise? That is the experience Melody has when hemoglobin is low — coupled with leg aches and pain, shortness of breath, and general malaise. Labs Monday, feeling this way, transfusion Wednesday, feeling a little worse each day until it arrives.
That is the application of patient-centered care.
Just about the time she recovers, feels the transfusion working, has a bit of energy — she’s back. The cycle resets before the benefit fully lands.
This week the window was 1.5 days.
1.5 days. That is what one unit of blood buys. She felt it — energy, mental clarity, something resembling herself. She noticed it enough to name it out loud: “It’s starting to wear off.” And then it did. The ache came back to her legs. The twitches started at night. Then the nosebleed that’s been persistent all week found a clot, sent it down the nasal cavity to the throat. She woke choking. Didn’t go back to sleep.
Up from 4am to 9pm. Chelation medication side effects running alongside — cramps, diarrhea. The medication that’s supposed to help costs something too.
The question on the table.
Emma looked at the labs again. One unit. BP 110 — and it did rise slightly during treatment, until the end, when it went up briefly before coming back down. Nurse Emma seems to make a measurable difference.
The oncologist’s documented concern with two units is fluid overload and blood pressure. That is a reasonable medical position on record. The alternative worth exploring: plan and manage with nephrology, provide two units responsibly — perhaps she needs fewer transfusions? Perhaps it is easier to schedule? Right now it is always multiple calls and two to three days of stress layered on top of already feeling the effects of low hemoglobin.
When there exists a way to eliminate the unpleasant part of a weekly event — the question worth asking is why we haven’t.
The question that doesn’t have an answer yet: what is the difference between two units once — higher hemoglobin, longer window before the next cycle — versus one unit twice a week in terms of cumulative risk, logistics cost, and quality of life between treatments?
1.5 days. That’s the window one unit buys. Then the cycle resets.
That conversation is ongoing. And she’s actually excited about an upcoming second opinion appointment at Winship — if you understand what it takes to get someone who has been failed repeatedly by the system to feel excited about a new provider, you understand why that sentence matters.
Meanwhile. Because the caregiver doesn’t stop.
I got a surprise availability check for a light stunt gig — precision driving. Melody was feeling stable, her mother was free to help with dialysis, so I submitted. Didn’t expect to book it. Booked it.
9pm that night — an email. Cut. Production changes to the scene. I went to bed, woke up eager, had seven emails and texts from the automated check-in system for the voucher, double entries for I-9 and W-4, emailed casting, got an answer ten minutes before call time. Didn’t go.
I wasn’t terrible upset about the day. I was upset about the payment — driving is fun, and I love stunt driving. But the day itself? It turned into something better.
Melody handled. Her mother there. The apiary hill needed cutting — not a big hill, but every inch of it takes a weedeater. Cut it. Cut the front yard. Cut the dog’s yard. Sorted and stacked logs for splitting. My neighbor brought his log splitter over a few days ago, so I got it moved to the first set of logs. June is actually the right time to get ahead on firewood — not too late in the season, and it’s satisfying to be readying for the next one while the current one is still warm.
Sore back and all — every bit of it was fun. Outside, nature, physical work, tasks completed. The kind of day that reminds you what normal used to feel like.
If healthcare worked as well as a Godly neighbor does, I think patients would live more comfortable lives — even in a terminal state.
There’s also a Lincoln LS that’s been sitting for three years. Long story. Getting more colorful every time work begins on it. Read about Little Sally here.
The mix of “when can I buy the parts” and “when is the transfusion so we can reschedule everything else” is a weekly calculation. The clinical trial payment I was expecting Tuesday didn’t arrive until Thursday. The transfusion landed on the day I had planned for the car.
This is not a bad week. This is just a week that ends in Y around here — and by all standards, a lighter one on paper.
Sunday night. Still.
Sleep study tonight. Sleeping somewhere that isn’t home. With neurodivergence. Equipment monitoring her through the night.
Monday — labs on the way home. Then we’ll know this week’s number.
Drop your guess below. Results next Wednesday.
Drop your answer on Instagram → @thepaulspringfield
Follow the series. Every Wednesday — the unfiltered truth about caregiving, chronic illness, and a system that can do better. If this resonated, share it. Tag someone in healthcare. Tag someone who deserves better than this.
If you want to support Melody directly — parking, prescriptions, the things that add up quietly:
@thepaulspringfield on Instagram · paulspringfield.com · #WifeWednesday
