Taxol Infusion Nº 2

Yesterday morning, we once again, got up ridiculously early to head to Dana Farber for our 8:15 blood draw. The routine was different. Instead of heading to the second floor, we had to go to the ninth. Turns out when you are not seeing a doctor, vitals and blood are done in the same area as treatment. they called me fairly quickly. Vitals, then moved on to a new nurse, Nurse Karen, for port access and blood draw. It was a trial day, so she took 8 vials of the stuff. I was then sent back to the waiting room to wait an hour for the results.

Nurse Karen was not happy that someone had pulled the steri-strips. She is a bit concerned at the healing which she feels isn't great. There is a scab, but it is raw. I am to contact the hospital if it starts to ooze.

Blood work was okay. Couple of numbers had done some large movement, but evidently the only person who noticed and/or were concerned was me. Because this was yet another new nurse she knew nothing about me. I had to go through all the same stuff about slow drips etc. And then as she says she understands, she pushed the saline so fast my body couldn't manage. This was going to be a long, long morning. She asked questions, but didn't listen to the answers. She would say things back that almost contradicted my actual answer. I had to say "No, that is not what I said" at least 10 times. She didn't notice the extra Benadryl in the notes from last week. She called my doctor asking her to justify why I wasn't getting Xgeva this week. She practically snorted at the idea that I negotiate my treatment with my doctor. She had no sense of humor. And she.simply.didn't.listen. At all.

I believe I will not be assigned to Nurse Karen again. I need to make that happen. She did tell me that Nurse Katy, who was to be my primary nurse doesn't come in in the mornings, so I will end up in nurse roulette and she suggested that SHE be my secondary nurse. Nope. Not happening! A message will be sent to Dr. Herold today to figure out a better plan. I can not play Nurse Roulette. I need someone who has worked with me consistently and often; who knows my body and how it responds to drugs.

And then we started. Steroid drip, again, asked her to slow it. Benadryl drip. Pepsid drip. And then a thirty minute wait. And then the Taxol slowly for 20 minutes while she waited to see if I would have another reaction. I didn't so she went to "normal" speed and then I fell asleep. I don't know if I fell asleep due to the 5:45AM wake up or the Benadryl. Doesn't really matter. I slept for the rest of the infusion. Came home, and continued my nap.

Once again, appetite is suppressed. Dinner was not finished. Only managed one dumpling and about 1/2 cup of soup with a few noodles. And this morning, I am up at 4AM. I think that my early wake up is the steroids talking. I need WAY more than 5 hours of sleep.

The only client that wants me to continue to work for them has scheduled a meeting at 2PM, so I expect a morning nap will be a requirement.

And then V arrives from New Mexico!!!! I can not wait. We met each other as we were both getting started in this cancer world way back in 2005. We both had to change directions due to our diagnosis and we are both doing our best to find and live with our new realities. She is doing it cancer-free, but not penalty-free. My penalties have been much less severe, but I am doing it with cancer. That is the crap shoot of life.