Had my third or fourth infusion of Pembrolizumab last week. It may be working, so we are keeping at it.
A major chunk of my life is now a dance of four feedings a day, attempting to space them far enough apart so that I don’t have trouble keeping the stuff down, yet close enough that I can get a full night’s sleep. The tumor has been changing very little, but my hearing has suffered (right ear canal squeezed shut by the tumor) I can only open my jaw less than half an inch, and I have pain 24/7. Dr. B says that is not surprising, and consistent with the Pembrolizumab slowly adjusting my immune system to target the cancer cells. If so, then within a few more months, we will see the tumor being de-bulked. It may be very gradual, and may take several months or even a year to show substantial improvement, but I am holding my own, and plan to outlive this cancer by a couple of decades or more. One thing I am looking forward to is the tumor shrinking enough to allow me to open my mouth more than 3/8” again. That has not changed much in weeks. When that turns around, and I am able to open this loud mouth more, the world is going to hear about it.
I have once more fine-tuned my feedings, and my taking of the myriad meds that are keeping me afloat. On rising, I take liquid meds to quell acid reflux, bloating and nausea. That is also when I take my liquid vitamins, since I am measuring 5mL and 10 mL volumes. I let them work for 30 minute3s, and begin mixing my breakfast. I have my other morning meds dissolved in a flask, and having soaked from the night before, they usually have very little undissolved solid. I pour that into the shaker, and bring it up to 8 oz., with coconut water (rich in Potassium) and add my 3.5 gm of fiber. Then a can of Jevity nutrition shake brings it up to 16 oz. and it’s ready to mix. Once the half hour has passed, and the meds have taken effect, I pour two ounces of coconut oil into the funnel/syringe, and it takes a while to go down. Then, I pour the mix, shaking it every so often, to keep the meds and fiber suspended. After that, I flush with the last 3 oz. of coconut water, and clean up. Then, if I have not already done so, I grind up and soak the next batch of meds. Many of my pills must be cut in half or smaller to fit into the grinder, but it makes fine powder of them once it gets them in its jaws. I also have a couple of gelatin capsules that I take, which I can open and just pour into the flask. I use the same technique as I use with other things to keep them from getting lumpy: tiny bit of water first, thick paste, slurry, solution. I let that sit until the next feeding, so it will be as thoroughly dissolved as possible.
The separate meds happen twice a day, and the nutrition four times a day. Add dressing changes for the feeding tube and the tumor, and that all uses up a major chunk of my time. Oh, yes – Pembrolizumab every three weeks, hydration for several hours twice a week, and visits with various doctors and nurses and whatnot… I want to be DONE with this cancer! I have other things to do!