Week Two

First week seems to have gone great. I say "seems" because I caught my son's cold and have been sick since Saturday night! If it had happened sooner I wouldn't know for sure if it was sick or side effects, since they said I might expect flu-like symptoms. But this was far enough out, and my son was sick Thursday and Friday. I stayed away from him, which I hated because instead of mothering him I was treating him like a leper! I think I actually got it from my husband. On Friday he said he was getting it but Saturday morning kissed me. I said, aren't you sick? And he said he didn't think so. We're going to have to come to an understanding I guess because while I hate to not kiss my husband, I can't tax my immune system either.

So after all the snafus last week the BIG thing was seeing how I would feel! And I have to admit I mostly felt great! Tuesday I slept through most of the treatment because of the Benadryl. I expected to take a nap when I got home but wasn't sleepy anymore. I cooked dinner and did all my usual stuff. Since I have Open House this Tuesday, I was happy to find that I would have been just fine to go out that night.

The only big thing was that I couldn't sleep Tuesday night AT ALL. I was WIDE awake too, not just the usual insomnia. I was up till time to get the kids up for school, then I went back to bed for several hours and slept. The rest of the week I slept fine. I have added Melatonin to my evening routine and it seems to help. I have not been sleepy at 10 PM in years!

Because of the timing after the last cycle I was most worried about Thursday. Plus, that's my Girl Scout night so I want to be up for that. Again I was fine. I remained fine and went horseback riding with the girls on Saturday - even riding myself which I had not planned on doing - and may not have been the best idea because when the day is already hot as hell, and you are on top of a horse, it is NOT the place you want to get a hot flash!! Luckily we were coming in and I asked them to get me down before any of the girls. I'm not sure what would have happened if we'd still been back in the woods.

Tomorrow is #2 - hopefully it will go the same way!

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.

Back on Track

My doctor visit went pretty well today. I talked to him about my concerns and the lack of communication. I know he just sees lots of people and can't be expected to remember every little thing. Anyway we decided that I will start the next round next Tuesday so I will only be a week off. I will try it for 2 weeks on the weekly cycle. If I am not happy with the way I am feeling, and that I can't get my stuff done that I want to do (as far as having a life, LOL) we will switch to every 3 weeks. If I do that i will be back on the exact schedule I was supposed to be on.

So while I still wish we hadn't had this misunderstanding, I am satisfied with how we worked it out.

I also talked to the nurse about how I was feeling treated 'like a cancer patient" without regard to what was convenient for me. When I checked out, the chemo nurse asked what time I would like to come and I thanked her for asking. Then the other lady making my next appointment asked the same thing. I guess she heard the exchange! I thanked her too and said it really means a lot to just be asked "how is 9:00" rather than told "it's for 9:00". she said she hadn't thought of it that way before. So hopefully they really heard me and didn't just start gossiping about me when I left - LOL - but I don't really care, it just felt good to be asked for once!

I do have a life, you know.

I've said many times I don't think the doctors realize this. From the very first appointment, where I had NO SAY in what day or time but they just called me and said, not "how's Friday at 10?" but "he will see you Friday at 10", to now.

Last week I realized my appointment card said Thursday, the 18. I figured it must be a mistake since my treatment was scheduled for Tuesday, the 16th...right? So I called and was told no, it was right. I asked about the treatment and was told I was not scheduled for a treatment this week. HUH!!! So they put me through to the nurse who said oh, sometimes they like to wait an extra week or two before doing the new drug, to give you time to recover. Only NO ONE EVER TOLD ME THAT. Not even when I was in TEARS in his office crying about my schedule being messed up with the weekly thing. Would have been the perfect time to tell me about this, don't you think?

Then I found out he is on vacation and won't be back till the 18th anyway, so there was nothing I could do about it. Now I am wondering if this whole "wait" thing is due to him being on vacation??

So I've had a week to figure out what I want to ask or say to him. Bottom line is I don't really care about anything except my schedule. I want him to do whatever needs to be done in order to get me back on that. Sound unreasonable? I really don't care. I am tired of being treated like a big ginormous hunk of walking cancer.

I have a life, and things to do. I am not sick. I'm not sick, that is, until they stick a needle in my port and shoot me up with crap I don't really want to take. I'm doing what I have to do, but I also have other things to do, and I'm tired of the doctor acting like I am just lying around waiting for the next appointment.

Don't get me wrong, I'm sure he actually HAS patients like that. But I am not one of those, and he needs to realize the difference, and at least TELL ME what is going on.

If I hadn't been sobbing in his office that day I could write it off as a fluke. But since I did actually sob in his office, and he still didn't tell me, I can only assume he didn't want any dramatics before his vacation. Yeah? I think that is a perfectly reasonable assumption.

So he is going to do whatever it takes to get me back onto my schedule. We'll see what that entails, but it WILL be happening, you can bank on that.

Update

Just a little update from last time. It took me 2 full days longer to recover from the last treatment. I was starting to wonder if I would ever get better. But when I finally did it was pretty quick as usual. Like I couldn't eat anything Monday morning, and by evening I was snarfing down a steak in a restaurant. I can't tell you how happy I am to be DONE with that red crap!!!

News about the next drug. I am going to ask if I can try it every week for the first 3 weeks, then if it is making me sick for too long I can switch back to every 3 weeks on the same schedule (since everything fits so neatly into that window). He is going to think I am nuts but newsflash: I DO NOT CARE. I can't control anything else about this mess but I am going to put my foot down and be a bitch on this one. Blah.

I went on a solo road trip this weekend to a class reunion. It was 8 hours away in Arkansas. I moved away from there and didn't graduate with them but they wanted me to go. It was really fun and I'm glad I went. Glad I can still do some things in my TWO GOOD WEEKS that make the doctor think I am crazy. Well, I won't let cancer control me, OK? So there.