Toodles, Adriamycin!!

Today was my last treatment of the evil red stuff. Adriamycin. Hooray! Once I get over this treatment I will be done with it forever!

Next I will do Taxol and Herceptin. I would explain what they are but I haven't a clue. Taxol is the chemo and it's supposed to be easier on me. He had told me we would do that every 3 weeks. The Herceptin is every week so I will have to go every week. Then yesterday he told me we would do the Taxol weekly too. I was super upset because I have just planned my fall schedule with 1 week down, 2 weeks good! Today I was crying to the nurse about it and she went to talk to him about it. He said OK we can do it every 3 weeks if I want to. I think what I really want it to try it weekly and see how I feel. A lady there said she was only down for the rest of the day and then went to work. If I feel good on weekly I can do that as it's a lower dose. I would expect to feel worse on the 3 week dose but I would still have 3 great weeks. I was crying because I have grown to count on having TWO great weeks and I felt like doing it weekly was not only thrown at me (I know he told me 3 weeks at first - I wrote it down, and John also remembers). One of the worst things I face is the lack of control over my life. I can handle anything better if I know what's happening as much as possible!

And the lady I met last week that was getting her first treatment? I told her she looks familiar today. Turns out she is a Girl Scout leader whose daughter just graduated. She has actually been asking around to see if any troop needs a co-leader! Well, I happen to be looking for one. Mine moved over the summer. None of my parents were willing or able to commit so it looked like I would just be able to get help from them but not a commitment. So to me this is HUGE! Now we can divide up duties and my load will be much less.

The down side is she is on the same treatment schedule as I am so we still have that to work around, but I had already figured out a solution for that. Hooray!

Hmm.

I stink at thinking up titles for posts.

We are home from vacation. It was really nice, even if it wasn't Disney. This is the week we were supposed to be in Orlando and I am less resentful of that than I expected. I think the older boys were somewhat bored in Arkansas and are more upset to be missing Orlando. We are planning to go next year though, so it will be OK.

I have a huge list of things to do this week. I am working at VBS each day until noon and need to get all the school supplies and clothes purchased so it will be done before my next treatment. I will have a good week before school starts, but I would like to beat the rush and just have it done. Plus, my plan is to take one kid out each day after VBS and have lunch and then go buy shoes etc. 5 days = 5 kids! (oldest is out of town and there is an extra month before he has to go back to college so we will do him later).

While at my brother's house I found out something that upsets me a little bit. I'm sure my feelings are irrational but still. I am in fairly frequent e-mail contact with several relatives and friends of my parents. I have sent out updates on my condition and how I am feeling, even if they didn't ask. Well, apparently some of them don't believe me and are contacting my brothers to find out how I'm REALLY doing.

I think I've mentioned before that I dislike being talked about in the first place - if I was incapacitated that would be different, although I may still dislike it - I am trying to avoid ANGER because it doesn't achieve anything but I am confused by why they would feel the need to do this (given that I am keeping them well updated) and why they don't believe me in the first place?

Is it that they don't believe there can actually be good days and that someone may be truly keeping a fairly good attitude about all this?

I don't know, but it does bother me.

I have no idea who, if anyone, is actually reading this blog. Here is where I am perfectly honest about my experience and here is the only place that people can see what a baby I am during treatment and how I seem to have a split personality about the whole thing once I am back in the good days. Most people do not hear this exact version of things. But here is the truth about my experience so far:

• Cancer sucks.
• I no longer HAVE cancer.
• Chemo is not as bad as I expected.
• That is not to say it isn't bad. I feel like crap for about 5 days after each treatment.
• Only 2 of those days, however, are really really completely crappy bad. The other 3 are not really bad at all in comparison.
• Then I feel pretty great for 2 weeks. Sure, I have frequent headaches and some other issues related to the treatment, but so far I have been able to live my life (during those 2 weeks) in such a way that if I weren't completely bald, and lopsided up top, no one would ever guess I had any problems at all.
• Then, once I start feeling really good and I dream that this this is all a dream, I get to go in and do it all again. But only a few more times!
• If you want to know how I am doing, ASK ME. It''s not like my brothers know, anyway, considering the fact that THEY don't even ever ask me. Just saying.

Vacation!

We left on vacation as scheduled. I didn't feel that great, took my bowl with me just in case but never had to use it. Note to self for next time: pack some bananas, because that is all I felt like eating at first. I felt progressively better as the day wore on. When we got there that evening I felt pretty much fine as long as I was sitting. I was lightheaded if I stood for too long.

The next day was MUCH better, and today I felt completely normal. I went on the campus tour and aside from needing some water (it was a HOT day!!) I did a lot of walking and held up great.

I need to quit being such a big baby on the bad days. Maybe I would feel a little better if I didn't whine so much.

smell

The smell won't go away. It's a chemical smell and taste in my mouth. It reminds me of this awful super glue type stuff John mixed up once. It is disgusting!! And it's part of me at the moment.

We're planning to go out of town tomorrow. We're going to visit my brother and it's about an 11.5 hour trip. When we planned it I didn't want to do it so soon after treatment. I don't know why it was insisted on to go this week. My son planned a college visit but it can be moved. Anyway, I am still not feeling great, of course. I guess I can probably sit in the car on the road. I should feel better tomorrow; I have felt better as the day progressed. But people keep asking if I will be ready to go and the honest truth is, I DO NOT KNOW. I won't know till morning, you knew this, stop pushing me! I am ready to say go without me, I don't care.

Side effects

I am lost in a chain of side effects, with no way out except time. The chemo causes nausea, for which I take kytril, which gives me an excruciating headache. I can take hydrocodone for that (advil doesn't work) but that causes more nausea and other symptoms. Where does it end? I hate taking anything at all!

This time I also have a very strong chemical taste in my mouth and the smell is in my nose. I showered twice to try to get rid of it but it is still there. It's terrible.

tomorrow should be better.

Third Treatment

Almost half way done! Just one more with the "red stuff"! Then I will do 4 of something else. They said the side effects aren't as bad on that one. So that seems exciting to me. It takes two hours longer to drip but the kids will be back in school by then.

Lots of issues I have been meaning to write about. I wasn't feeling too great last week. Two of my kids had summer colds so I am thinking it's from that. My doctor says my white cell count is "amazing" so that's a good thing. I hope it stays that way! Anyway, there are no words to express how completely PISSED OFF I was about not feeling good when IMO I should have been feeling good, out and about. Then I would stop, take a deep breath and remind myself to not stress, to take one day at a time and go with the flow. That really did seem to help.

I had a period in between, which I have not had this whole time. Doctor says the treatment can cause temporary early menopause symptoms. Only I don't think it's that "early" for me at age 47! Anyway, this one was as bad as they have ever been since the triplets were born. Makes me really eager for the hysterectomy!!

I have also come to realize that with oncology offices, they either don't care or just assume that you have nothing better to do with your time when it comes to visits. Not once have I been asked if an appt. time is good for me. Even initially my info got sent to them and THEY called ME, and told me when I was coming in! Next time I think I might mix it up and say "no, that won't really work for me" and see what happens. LOL. Nothing has been really inconvenient, but it still bugs me some. I know, I know - lighten up!! Deep breath.

For my visit last week I was in the outer waiting for 55 minutes. They called me back and after I saw the nurse it was another ENTIRE HOUR!!!! Deep, deep breath!! I had nothing to read, I had forgotten my phone so couldn't even play on that. I read through all the stages of various forms of cancer, though. Hooray. I was SO MAD by the time the doctor came in I had decided to be a bitch about it. But the first thing he did was to apologize very sincerely. There had been some sort of mixup and today was overscheduled, where it had been slower all week. He did seem really upset himself so I gave him a break. I just need to bring a book next time! And I did mention I should just see him on drip day and drag my pole into the exam room, since I am already there for 4 hours. he laughed, but didn't bite. I may ask next time. This is MY good week, dammit! No offense but I don't want to spend it in the office.

Today at chemo there was a lady next to me getting her first treatment. She didn't speak at all and had headphones on so we didn't talk till the very end. She is on almost the same treatment as I am, and on the same schedule, so we should see each other again. She looked so freaked and scared. I did reassure her and give her some of the tips I have learned. I didn't think to give her my phone number! I hope I see her again next time.

Dr. switched around my nausea meds saying there is no reason I need to be nauseated. I was waiting till I felt sick to take it but I need to stay on schedule because it's harder to bounce back if you wait. We'll see. Tonight my right leg is EXTREMELY restless. I recall this happened on the first night last time too. There is really nothing that can be done about it. I have read potassium helps so I just ate a banana. Otherwise I am completely exhausted but can't go to bed. I can not describe how horrible it is - no pain - just the intense, irresistible urge to kick my right leg!!

Someone was talking to me about Susan G Komen again. She had brought me a bracelet which I accepted gracefully I think. I didn't want to immediately go into why I hate them just then. Yes, I still detest them. I believe they are a detriment to the cause for which they were invented. I think they should be ashamed of themselves. I will accept the gift in the spirit it was given but I will NOT give them a penny myself! Until I read a statement on their own site that they have changed their ways. But I won't hold my breath! /soapbox

So that's about it for now.