My Battle with Merkel Cell Cancer

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white count was down to 1900. The purpose of the Taxotere was to enhance the effect of
the radiation treatments and I think they need no enhancement.
I continue to lose weight and am not ingesting adequate nutrition. I saw a dietitian
yesterday morning and the choices or me are tube feedings, intravenous
hyperalimentation, or to force enough food down by mouth. I opted for the latter, but
failed. Tube feedings could be done through a naso-gastric tube or a percutaneous
gastrostomy. I don't think I could take a nasogastric tube for very long so this narrows the
choice to IV feedings or a percutaneous gastrostomy. This is a tube placed through the
abdominal wall into the stomach. Bottom line: IV nutrition for me.
This will be set up this afternoon. Apparently Medicare does not cover all the cost, but I
will only have to pay $35 per day.
I have only 8 more radiation treatments left and am off the taxotere, so I don't think this
will go on for more than a month.
I am also back to another series of Leukine for my white count.
I am writing this after a meeting with the home infusion nurse. She has been very helpful
in getting this all set up and will be back tomorrow to watch me set it all up for myself. As
a trained physician, I think I can manage all this without great difficulty, but without such
training, it would be a real challenge.
Supplies delivered this afternoon included multiple tubes and pre-filled syringes, vitamin
doses to add to the fluids, plastic bags each containing 1900 cc of what looks like low-fat
milk, a battery powered infusion pump, and supplies needed to test my blood sugar.
All went well except that I was concerned about a small amount of air in the infusion line.
I removed it from a side port using the needle to add the vitamins to the infusion. All is set
up and running. The infusions last 18 hours giving me only 6 hours free of the pump
which is neatly housed in a back pack they provided.
The pump is not entirely silent and will take some getting used to, not unlike my dog
snoring (he's much louder). I suspect it will be one reason I'll be sleeping alone tonight.
The other is that I will have to shower during that 6 hour window.
I did manage to down 3 bottles of Boost Plus today so perhaps if I can continue that, I
can shorten the infusions.
No IV pole, so I have rigged something up with a camera tripod. I'll ask for the pole
tomorrow.
Thanks Karen for your patience and instructions in getting all this set up.
I am still hoping to get to Good Company Players to see Eva in the final performance of
her drama classes. That will take place Friday afternoon about 1/2 hour after I remove
the infusion during my 6 hour break.
Posted by David Shuster at 11:11PM (-07:00)
Into The Home Stretch. Review. Details of TPN
Thursday, August 11, 2011
I have only two more radiation treatments to go. It will be all over on Monday.
To recap, I originally found a lump in my face on the left in front of my left ear. There was
also a small nodule in my left parotid (salivary) gland. Surgery and imaging showed one
or two involved lymph nodes in my neck on the left.
After the surgery, I had radiation treatment only to the area of involvement. At that time, I
was advised that the chance of complete eradication of the local disease was 80%.
However, there was a 50-50 chance that the disease would appear elsewhere. If fact, I
was on the wrong side of those odds, and the disease reappeared as a mass adjacent to
My Battle with Merkel Cell Cancer