We did this one on a Thursday, much more like a “typical” chemo procedure.
- First, chat about the prior week with the nutritionist, the nurse, the drug trial research assistant. Symptoms? What did I eat? How’s the nausea? How’s everything “coming out”? More important questions were about my sore muscles & joints on the 3 day following the infusion, and whether I had a headache too (no).
- Then hook up the port, that was “installed” just over a month ago. This means just seating a little cap that drives a thin tube into the socket just under the surface of my skin. This is done under high sterile conditions, the skin around the socket is cleaned. The nurse & I both wear surgery masks. I wear a button down shirt so it can be moved aside without having to take it off. Sterile paper separates the socket area from the shirt. These precautions are because this little port tops a tube that runs directly into my jugular vein, kinda one of the interstate highways for my blood returning to my heart. Anything going into the port, goes into my bloodstream, directly.
- Then it gets all taped up so noting can be easily yanked off or displaced. Good idea, very tidy! And then since they already have access, they draw some blood for testing. Finally a blood test without additional needles!
- Hang around for 30 minutes while the very fast phlebotomy lab turns the results around and Dr. Picozzi & posse talk over the results. My bilirubin finally got the much desired 1.2 mg/dL!!!! BUT the 1st chemo dropped my T-cell count a lot. Enough to make an adjustment of reducing the amount to be infused by 25%. This is not as boring as it may sound because they included me in the discussion, explaining the impact & affects on my body, and connecting the joint & muscle pain to the white blood cell drop.
- Each round of chemo is prescribed by the Doc on the spot, custom made in a compounding lab somewhere in the warren of Victoria Mason, and then returned in IV bags to get dripped into my port. This takes another 30-60 minutes.
- Then the 1st chemo bag gets plugged into me. I’l tell you about the chemicals next week. There are 2 bags, one for each chemical. They’re each aded one at a time, and the start & end times are recorded. This takes about an hour.
- Finally, detach the cap over the port and put on a little band aid. The port closes up right away, and in about 2 hours the skin above will heal from its tiny perforation. Cleanup and go home! This week it took the full 4 hours.
Writing about this 3 days after it happened lets me finish this week’s story in one post! My “bad” day was a lot easier than last week’s. Less aches & pains. Still fatiguing. I took a nap yesterday and dragged around a lot. But all in all it was just about 75% as difficult as last week. Is that the same as 25% easier?
The big difference is that I did a full day of work the next day. We’re on a Thursday chemo schedule from now on. So I worked from home on Friday. We’re in this really tricky phase where we all learn to use the shared tools we al bring to the work, which means we have to agree on language, syntax and how concepts relate to each other and will be used to do the analysis work. I’m in a 99% facilitator mode right now, making sure that each team member’s work is used where it counts the most, where everyone is working in areas where they are most interested, and that everyone gets heard and the listening is done with at least a little shared context…preferably as much shared context as we can paint on.
Facilitating . this . is . exhausting … But it’s doable, so I got through the day pretty well.
And here it is, Sunday. Not all the way better but pretty damned good.