Chemo 2

I am doing surprisingly okay this time after chemo -- maybe I am using the antinausea drugs better? I'm not sure. I had a bad experience at the chemo itself which I just wrote an email to the doctor about...... though I have to wonder, now, why it's better after -- and if it has anything to do with it being worse, during. Probably it has more to do with the 4.5 liters of water I drank during the drip in a vain attempt to compensate for the too-fast drip. I hope it didn't flush the medicine out too quickly though.

The blue writing below is exerpted from an email I sent to the doctor today -- and this whole blog post is a big rerun for Zack and Lynn. (I just never think of the blog first.) Anyway here goes:

I had learned during my first chemotherapy infusion (3 weeks ago at Arlington Hospital) that I experienced bad side effects during the course of the treatment when the infusion of cytoxan came through faster than 100ml/hr. Last Thursday I came prepared to let the new infusion nurse know about this from the getgo, and I did. However, I did not anticipate her refusal to respond to a patient's knowledge of her own body.

The nurse refused to slow the drip down; in fact she had me wait over an hour before administering it while she got approval from my doctor to slow the drip down -- after which she came back with the adriamycin in a 30 min infusion, and the cytoxan just the same. (I hadn't had any issues with the adriamycin push the first time, and the bag of cytoxan infusion didn't need to be changed, only the pace at which it was infused needed to be slowed down.)

She gave me a bag of saline first, and insisted that it would do the same job as slowing the drip down. When she started the cytoxan drip it was set for 297 ml/hr (twice the speed that it had been set for when I started it the first time, and three times the speed I had told her I knew I needed.) I let her know when I started getting symptoms, and she slowed the drip down. The symptoms continued, and she slowed it down yet again. I drank as much water as I could fit in me while the cytoxan was coming through (4.5 liters) in a vain effort to compensate for the speed of the drip, but the symptoms continued. By the time she slowed it to 100 ml/hr it was too late to stop the symptoms, and I left the building feeling sick.

By the end the nurse realized that I did in fact need the drip as slow as I had said, and told me that we'd need to talk with the doctor about getting me up to the infusion unit earlier so the drip can be administered more slowly. However, from what I observed. this issue could easily be resolved by the doctor prearranging with the chemo unit that my cytoxan drip be set for 100 ml/hr, and alerting them to the fact that the admininstration of the cytoxan alone will take close to 2 hours, so that they can get me started within an hour of my arrival on the floor.

Last Thursday I arrived at the infusion unit desk at 1:30pm (admittedly 2 hrs late, as my 10 am appt. with the doctor took a lot longer than she had anticipated -- waiting time, almost entirely) was not started on any kind of infusion until approximately 3:15-3:30, and was discharged at 6:35pm.

Anyway it all does have a happy ending -- though I felt sicker initially I feel much better today and yesterday than I did after chemo last time. (Thus my worry about having flushed the drugs out of my system too quickly.....) Also, though my white count was low enough for a neulasta shot even though my chemo appts. are 3 weeks apart, my mouth sore is healing (I think because I spent one day not eating much -- yesterday -- the sore is on the lower lip, and it's hard to heal when you're in the line of fire like that.

Hopefully the drip speed thing will be resolved before next time.....

Posting Comments

I've been hearing from several people that they don't know how to post comments. It was suggested that I post instructions..... so here they are.

If you click on the place in the blog that says "0 comments" or "4 comments" or whatever, it will show you the comments that other people have made. There will be a blank box in the upper right hand corner and instructions to post your own comment there. I think maybe you have to post as "anonymous" if you don't have a gmail account or something -- but you can write your name in the body of the comment, if that happens.

That's how it's always worked for me. I suppose it might be one of those things that some computers do differently, but try this, anyhow. We DO love comments!!!

Thanks! :-D

Bikeride and Chemo

Well tomorrow's my last bikeride before the 2nd chemo on Thursday. Thanks to the cooperation of BikeWrenching Jonathan, my Pilot (nice bike) has been good enough to wait for the overhaul ... I have to bring it in tomorrow afternoon after my ride so we can be on the fritz together -- and my old mountain bike is all fixed up to take me to the chemo on Thursday. (Phew! If you saw the parking garage at Georgetown you'd understand.... Alan insisted on a chaperone. Joan volunteered..... :-D)

The hair is all gone. The short haircut was a bust.... I had to step into my clothes or wear a hat when pulling shirts over my head to avoid getting all that itchy hair under my shirt -- the way you get right after a haircut, but MORE.

Hey, I have a mystery...... Who sent us the indoor bulb garden? It had no note and so far all our guesses are wrong. I'd thank you, if I knew who you were....