Starting the Second Half

I got my first dose yesterday. There were, once again, a series of snafus and misunderstandings and miscommunications. I love the doctor and his staff but I am getting really tired of it. I am trying to give them the benefit of the doubt, plus, I seem to be the only person this is happening to! This is the FIRST time I have stepped up and spoken up for myself and it's really out of my comfort zone, in a medical setting. I am not sure he knows what to do with me. LOL. He doesn't seem to mind my questions, like Dad's oncologist did, he would get really huffy and say stuff like "where did you get your medical degree?" Ugh, grr. This guy is open to anything and even when I consulted an outside nutritionist who believes in supplements, he worked with me without question (we had to get different bloodwork and such to get started). So I have to remind myself that I AM HAPPY with this group.

Anyway, yesterday I went in and I wasn't on the schedule! I showed he my appointment card and even if I hadn't brought it they would have put me in. The nurse just forgot to write it down. No really big deal.

So then they had to get my meds together since they were not ready for me. This required consulting with the doctor on the dosages. Meanwhile they got me started on my "premeds". Nausea meds, steroids, and this time I need to have Benedryl for the first few doses to help me adjust to something or other. I had been told that this treatment takes 1.5 hours. The last ones took 3, plus the time to set up and then unhook me. Maybe 3.5 total. So after I had dripped for 1.5 hours my timer went off and she came up and I thought I was done. So I said, done already? and she laughed and said no, that was just the pre-meds, now is the chemo. There are 2 different types - Taxol and herceptin. I didn't know if they gave them at once or separate, how would I know? So I just asked how long do I have left? She said, 1.5 hours. I said, for each? and she said no, total.

By the way I slept through most of the early part because of the Benadryl. it knocked me right out!

Then when they came to hook up the Taxol she said oh by the way, the first dose is called a "loading dose" and is a much heavier dose than you will get from now on. Just to see how you tolerate it. And we need to give it for 10 min, turn it off for 15 to see if you have a reaction."

Note: I don't care about any of this, I just wish I would have been told BEFORE that this 1.5 hour drip was going to end up being 6 hours! Good thing I didn't have another appointment!!!

After 1.5 hours she came back and I thought again that I was done, but no, I still needed the Herceptin! I KNOW she told me 1.5 total, I specifically asked her AND I texted Evan to tell him I would be late so he wouldn't worry.

So anyway it was 3:00 before I got out of there. I had gotten there at 9:00 for a 1.5 hour drip.

For the record, the nurse told me that the doctor never counts the pre-meds when saying that time. They just always forget. But anyway pre-meds don't take that long, maybe 30 minutes to no more than an hour. This just took longer because of the loading doses, the schedule mixup, etc.

But still - most of this should have been told to me beforehand. The only surprise thrown in was the schedule issue. I just HATE being told the wrong thing. Especially since my brain is so foggy now anyway - I ALWAYS write everything down - and yet I still manage to feel stupid. But really it is THEY who are not telling me everything. I just don't think they realize or remember. They're only human. But when I ask SPECIFICALLY about something it seems like it shouldn't be so hard to JUST TELL ME.

OK, so on to side effects. For one thing, I can't go by my reaction this week since it was a much heavier dose. Here is what has happened so far:

After coming home ready for a nap due to Benadryl, I was suddenly wired up instead. This could be the Benadryl or the steroids. Last time I was OK for 2 days until those wore off. I certainly hope that doesn't happen this time. I NEED to be feeling pretty much normal by Thursday. That is my unflinching rule for doing this weekly. So far it is Wednesday morning and I feel great - other than for lack of sleep. I got ONE HOUR of sleep last night. I simply could not sleep, I was wide awake. I hope that doesn't happen often, but I shouldn't need the Benadryl if I didn't have a reaction so I may ask them to leave that out. Steroids did not affect me like this before so I think it's the combo. Last night I felt totally normal, while last time I was able to function but felt dizzy and weird and had the constant restless legs. I didn't have that this time, Thank you God! So today I feel normal (albeit very tired, I plan to go back to bed pretty soon!).

The lady in the chair next to me is on the same treatment and it's her 6th time. She says she goes home on Tuesday and sleeps (she gets the Benadryl each time) and then goes right back to work and feels fine. She did say she has bad constipation so she takes a fiber supplement and it helps. No other side effects. I HOPE that is how it goes for me. I have fiber, stool softeners and I am going to eat a prune every day and see how it goes.

But if I find I get sick tomorrow and can't function by Thursday afternoon at the latest, I will switch back to every 3 weeks. I would still have to go in weekly for the Herceptin, and the 3 week dose of Taxol would take 6 hours for both, so I am really hoping that this weekly thing works out.