Nurse Karen in the Rearview Mirror

The phone has been ringing off the hook this morning. I sent this message to my doctor's assistant around 8AM this morning.

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Good morning P.,

As you can see from my records, I have now had two Taxol infusions. I am rather surprised by how well I am tolerating this treatment. I will give Dr. C the details when I see her on Tuesday.

However, I do have some concerns about the infusion process and who will be administering the drugs. My primary infusion nurse is Katy but Katy doesn't work early mornings. This has placed me into what I am calling "Nurse Roulette." I have had two different nurses and this is not tenable. I can't re-educate nurse after nurse after nurse on the specifics of my body; listen to lectures about Taxol week after week; I just don't have that kind of energy.

Unfortunately, on patient gateway, I can't see a list of past appointments and the provider. I really liked the Nurse that I had for Taxol Nº1. I never want to see Nurse Karen again.

The reason for this email is to alert the two of you that I believe I need to have a new primary infusion nurse, and I do not want that person to be Karen. I need someone who listens better, reads the previous infusion notes more deeply, and has a bit of humor. It makes sense to have someone who is regularly available for the morning hours on a Tuesday, though I do understand that schedules change. So, I am not saying I MUST always have the same nurse. Instead I want to have a nurse in my records who is apt to be available regularly.

Though I would appreciate a message back before Tuesday, I understand that time is in short supply. I will hope to talk about this on Tuesday with Dr. Herold.

Thank you so much for your attention.

Susan

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Well, there have been many Nurse Karen complaints. She is on some kind of probation like thing. I will never have her again. The doctor has called to apologize. The nurse manager has called. I have been moved to another nurse permanently, one who is generally working early Tuesday. Katy will be my secondary since we have been together for a long time. The outcome is good. I was just able to eat an egg with melted cheese on top. Can't say I enjoyed it, but it was tolerable. Another 2 lbs gone since yesterday.

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.

Fourth Progression

14 months. That is all Xeloda could give me. Not very giving, if you ask me.

But back a few weeks. I had a pain in my shoulder, like a pinched nerve but not. I didn't think I had strained it doing anything, but the pain just stayed. And stayed. And then it got worse.

At my next doctor's appointment, my blood markers were up– again! Dr. C was clear. It was time for scans. And she wanted to add a MRI to the mix this time. And they were going to look at the brain stem. UGH.

Well, I wouldn't have reactivated this blog if the results had been good. More tumors in new places of my spine. No brain tumors but the top of my spine is now affected. And my ribs, also worse. Oh, and that pesky T3 which is probably why my shoulder was in such pain.

Dr. C reviewed the trials, which haven't changed much since we last reviewed them, and feels that none of them are appropriate. Nope, she wants [and will get] IV weekly taxol. I have no more veins. They are shot to hell after 12 years of chemo, scans, and blood draws. I need a port.

So, on March 14th, we woke at 4AM to head to the hospital. A snow storm was starting but hospitals don't close. My pre-op nurse was a guy named Stu, who usually works ICU. When he appeared on the floor, everyone called out "Stu." It was like a really, early morning "Cheers." My surgeon was a PA, and my anesthesiologist was a RN. They were both female. The PA, like so many young women of the millennial group, had the voice of a 12-year old girl. [Can someone explain this self-infantilization among well educated women?] It was hard to concentrate on the information she was giving me. The voice! Anyhow, she was over-riding the orders she had. Someone had said a medium double port, and she took one look at me and said "single, smallest size I have." We discussed placement. We discussed infections. Then it was the RN's turn, and we discussed nausea and vomiting and twilight vs fully under. And then they rolled me into the room. There were x-rays and then I was sent under. At some point I chattered "ah, you are pushing the catheter now" and the RN chirped back "I will give her some more juice!" They did bring me back up for the ultrasound since I had to hold my breath. They kept praising me for doing well. I finally said "I am so pleased that my years of studying for this moment is serving me well. YOU are the people who should be praised for doing well." They just laughed and sent me back under.

They nailed it. The port is right where I wanted it to be. I had no nausea from being under. I was home by noon. And then the snow got really serious.

Forward another week and once again we are up before the sun to get to Dana Farber at 7:30AM. Once again, start on the 2nd floor for blood draws, but of course, this time it was different. I now have a port. Oh she was so kind. She carefully explained exactly what she would do. She was disappointed that I didn't have a RX for the numbing cream. After she got what she needed, she left all the wires and tubes attached securing them with yet more bandages. I was free to head to the 9th floor.

Dr. C and my husband have never met. There was no reason to involve him for the past 5 years. I was able to drive myself, and there was no reason for him to waste a day of his month sitting in a hospital waiting room. IV infusions mean auxiliary drugs. You can not drive yourself home. He had to be with me, and it was time for him to meet Dr. C. She didn't talk to him. She still talked to me. Perhaps she was a bit stiffer than usual. Or maybe she was stiffer because this was a big thing she was telling me to do.

We rechecked in at the desk and waited for the infusion nurse to appear.

I was taken to the corner office. The view! Amazing. I suspect that this room is for newbies to bring them back. I will never see that room again! I don't think I will replay the whole time. There was an allergic reaction. Charge nurses were involved. Dr. C arrived. More benadryl was administered. The taxol was slowed down and an hour and half later, they let me go.

At home, I crawled into bed and slept. Benadryl will do that to you.

And today? Not bad at all. A bit steroid driven, but not crazy like back in 2005. I made some bread and cookies, but didn't eat them particularly. I am not starved. I am not jumping out of my skin. It is okay.

Cautiously optimistic. May this taxol stuff actually work!