Tattoos

I went in for "mapping" today. They actually gave me 3 little tattoos so they can line it up properly every time. They are REAL tattoos! One of the nurses had them herself 3 years ago and you can still see them. They used to use sharpie but it doesn't last and makes it more likely they will not radiate the right spot. So this is an easy way to be sure they get the right spots and minimize exposure to the wrong spots.

I will say it hurt like hell and although I never wanted a "real" tat, I sure don't now!

It was nice talking to the nurse. I really like talking to people who have gotten through BC and are doing fine living their lives. She decided to go into radiation after her experience. I'm thinking along those lines too (just beginning to). Anyway, the best part is hearing success stories.

I think radiation won'e be so bad, and I am glad I;m going to do it.

Cold and Flu Season

Just when I am able to go out into crowds a little bit more, it's "the season". You know, cold and flu season. Facebook friends from all over the world are posting about the crud running through their families and schools. Of course I am most concerned with my own area. There is a bunch of crud in our schools - mostly sounding like colds - even in my own family. I had a call about one from school today. There was no fever, and I was in an appointment, so he is riding it out.

I guess if I can get a flu shot at my appointment tomorrow, without going elsewhere, I'll think about it. I really HATE getting the flu shot. I would rather have the flu than inject myself with more poison, plus I really do not believe it's necessary in most cases. I am just not sure about now.

I had been looking forward to going back to church and other stuff - but I just don't know. What should I do?

Two weeks later

We went on vacation last week, and I felt pretty good. I know I overdid it, just because there was lots more walking involved even though I tried to take it easy. I felt quite nauseous at times, which I attributed to eating more rich foods than usual. I drank a little bit of wine, though never more than about a 1/4 of a regular glass. it's hard to see that that may have affected me, but I did feel a bit tipsy after only a few sips, so who knows?

It occurred to me I could take nausea medicine (if I had it with me) but it was never bad enough to justify stuffing more drugs into my poor overtaxed body. A little nausea, I can handle. I have been really tired and had expected to start feeling better quicker, but someone reminded me I overdid it all week so maybe that has a little something to do with it? Anyway I need to get up off my butt more often.

The really good news is that many of the others were sick (we always pass crud around at Thanksgiving, it's a family tradition! Anyway it was just a cold) and I wasn't! Well, I may have been, because I felt like just laying around one day in particular. But that was it. I was cramming mega-doses of vitamin C in my mouth and ate most of the Cuties. Oh, and apparently I have White Cells of Steel, ta-da!!

So yesterday I went in for my heart check. I'll hear the results of that on Thursday when I see the doctor. It occurred to me as I waited that it wouldn't be as good an indicator since I skipped Herceptin last week. Grr. Today I had my Herceptin. I felt a little nauseous at lunchtime but other than that felt pretty good most of the day. I promised I would try it for a month after chemo to see how it went, so far so good.

Tomorrow I go in for my "mapping" to get ready for radiation.

Thursday I have my checkup. Friday, I have nothing, yay!

Side Effects in the End

I thought I would record these since from now on it will get nothing but better! I will forget how it was if I don't put it here.

Until the past few weeks I was fine, other than the day of chemo. It's been getting gradually worse and lasting longer. Today I feel like I am coming down with something. I had a fever a few hours after the treatment, but it went down with Advil and a cool cloth and didn't come back. But it's the way I feel all the time basically. Every muscle in my body aches. my feet and hands are alternately tingling or numb. I have restless legs. Insomnia. headache. Blurry vision, nausea. My skin feels like it's tightening up on me. All over now, not just the scalp like before.

My fingertips and the side of my left hand - from the pinky to the wrist - feels like it's burned. John says it looks a little red. My hands and feet are swollen. Normally my wedding ring is really loose, but right now it's tight. My face is also swollen, and actually my entire body is bloated.

I can't sit still for long, but I can't get up and do much at a time either. I feel fine when I'm sitting, but when I get up and try to do something I tire very easily.

I am so happy this was my last one! I don't know if I could handle another!! The nurse thought I needed one more, because they were doing the Abraxane 3 on/1 off. This last cycle I only had 2. But the doctor had told me that since I had the first 2 doses of Taxol we wouldn't have to finish the cycle, just end after 12 weeks. By my math I actually had an extra dose, so maybe that's why I feel so bad this time? If I had done Abraxane the entire time I would have done 3 cycles of 3 on/ 1 off (for a total of 12 weeks). But instead I had 2 Taxol, then 1 week off (the week I had the reaction), then 2 cycles of Abraxane, then the last 2 weeks. So did I have extra or not?? I think I did. But I guess it doesn't matter at this point - whatever - it's OVER!!!!!!!!!!!!!!!

End of Chemo

The last chemo has been a bit anticlimactic. For one, I will be back in the chemo room to get Herceptin - at least for a few more weeks. Why else - I'm not really sure. I think subconsciously I felt "safe" getting chemo. Like now that it's over what will protect me from the cancer? I don't think that's a reasonable thought, but it's there.

I also felt strange because at some point I really WILL be saying goodbye to all the people up in the chemo room. We're the "back girls" and we're there every week, or every few weeks in some cases. We've learned each others' stories, all about each others' families, and just laughed together. It's the one place where no one looks at us with pity in their eyes (unless someone's family member comes in - they are not allowed to stay but will occasionally come back for a few minutes - and always, they have *that* look in their eyes). We're all normal in there. In a weird way I'll miss that. I will certainly miss them.

For now, I have spent the rest of the day feeling crappy as usual. I'm at the end of it, feeling better. Tomorrow I should be pretty much fine. Hopefully by this time next week I will be on the way to feeling normal again, something I have not felt for a very long time! It's ironic that with the really harsh chemo, I actually did feel NORMAL for the 2 weeks in between. I think it's just that I get it every week that I don't anymore, and also I think the herceptin doesn't help.

One of the nurses warned me not to go overboard when I start feeling good. She said I would start feeling really great but that I may still have ups and downs, and anyway my body is tired, and out of shape, and it will be very easy to overdo.

So while the chemo is over, this is not really *over*. But I certainly hope I will never have to go through this ever again!!

Bah.

The past few days I haven't had much appetite. When I do eat, I get full fast, and feel nauseous. I haven't asked about it, but they are always surprised to hear I am not taking any nausea meds, so I assume it's just part of the deal. I'll ask about it on Tuesday.

One thing I am REALLY looking forward to is having my vision back!! It is really hard to describe what it's like right now, other than saying it's like I need new glasses. I was told it was from the chemo and not to go to the eye dr until I'm done. So I need to find out WHEN I can do it. My vision is not bad enough to stop me from driving or anything else; it's just irritating. And sometimes it feels like there is something IN my eye, especially the right one, like a film causing it to blur just in the right corner. Really weird! But what's weirdest of all is my left eye seems to be BETTER. It is very blurry with my glasses on. That has always been my worst eye and has gotten progressively worse over the years. But now withOUT my glasses it's practically normal looking at close things. So I am way better off reading without my glasses right now in spite of them being trifocals. It will be interesting to see how they really are when this is all over!

I Forgot

It's very embarrassing to me to be forgetting everything from what word comes next in the sentence, to the right word to describe something, to scheduling something important (then getting myself or whoever where they need to be), down to remembering what I did or didn't do. Like signing a kid up for a field trip (I did, but don't remember doing it or anything else about it) or a conversation someone says they had with me.

So it would be nice if those closest to me could remember that this happens to me, and that I HATE it with every fiber of my being, and just play along, so to speak. Instead of this: when I ask where the field trip is going, don't say "you should know, you signed the permission slip". Or if I ask about something and we just discussed it last night and it's plain from my asking that I don't remember, just maybe answer the question instead of making me feel like crap for asking.

I know it seems petty in the big scheme of things, but it isn't petty to me.

Radiation

I was dead set against radiation, but promised Dr. M I would speak to the guy and keep an open mind. Today I had my consult, and I decided to go ahead and do it.

He explained it very thoroughly, how they would do it, what exactly they are aiming at (the chest wall) and WHY (the chemo kills any stray cells throughout the body but can't always get to the ones that may be left in the chest wall, mostly due to healing from surgery). He said side effects are much less than they were a few years ago when friends told me they still feel like they're sunburned.

Of course there is no way to tell if I actually NEED this. Like Dr. M said it's all a gamble. But I feel better about it and am going to go through with it.

We will start 3 weeks from my last chemo (so 4 weeks from today). I go in 3 weeks to do a "model" so they can effectively plan my treatment. I will go in every weekday for 6 weeks and it should take no more than 30 minutes a day (the actual procedure takes 3 min but there is setup time). The nurse says there is normally no waiting unless there was an emergency of some sort.

This will put off my surgeries but it's important to get started with radiation right away and not wait.

So, see? I can keep an open mind.

What's Keeping Me Awake

My elbow hurts. Really badly; I mean, if I hit it against anything it can bring me to nausea and tears. I guess I hit my "funnybone" but I sure don't remember and I would think, with this pain, that I would remember! The nurse says there are lots of nerves in that area, and I am having nerve problems as a side effect, so it's probably nothing.

Probably.

I have only one dose of chemo left. Hooray! And -- what now? The chemo was protecting me, so that when my other breast aches or my elbow is really making me wonder I can comfort myself. Much as I hate the chemo, and am happy to be going off. I am told this is a normal feeling. My friend is going off her 5 years of Tamoxifen, and she feels the same way. It's just the great unknown. I'm trying to just give it to God and not worry. I am not a worrier by nature. But still in the middle of the night the thoughts come, and somehow they are harder to quiet in the middle of the night.

My mind is made up on surgery. Then I hear 15 different stories and I doubt myself. It's made up on Tamoxifen, then I hear more stories and I am not sure what the right thing is after all.

I keep going back to what the doctor says. it's all a gamble.

I want a clear sign from God, He told me to do the self check, didn't he? So why not tell me what to do now? I'm listening!

I never really did like gambling.

Dentist

Last week, I scheduled a visit to the dentist. Nothing much - just the usual cleaning, x-rays etc.

When I got in the room the tech asked if I had been given any pre-meds. I didn't know what she was talking about. She explained that since I am on chemo (and, more importantly, have a port) I need special preparation. At the minimum, a pre-visit dose of antibiotics.

For teeth cleaning?? Yes, since they are poking around my gums, it's considered "invasive". Who knew??

It never occurred to me to ask the doctor if it was OK to get my teeth cleaned. Would it occur to you?

So last week I got the x-rays and everything done except the actual cleaning. I was given a prescription for antibiotics and instructions to take 4 an hour before I came back in.

Oh, and I was also supposed to tell the doctor and get his permission to have the cleaning done.

So when I got there today and proudly announced I had remembered my medicine, and she asked "did the doctor give you the all clear?", of course I had forgotten to even mention it. Or if I did mention it, I forgot the answer. I have no clue which, it could really go either way.

All was well - she called and spoke to the chemo nurse, who laughed and said "tell that crazy lady..." something I don't remember the rest of. I know who said it, and she didn't mean anything by it, so I'm not offended.

The bottom line is my teeth are now clean, and that's the important thing, right?

neuropathy again

It started yesterday. It was much worse then and was combined with severe restless legs. Today it's better but still there. I knew I had written about it before so I looked back to see when, what day etc. It was a chemo/herceptin day. Yesterday was only a Herceptin day. So does that mean it's from the herceptin and not the chemo? I don't know. I'll keep a record so I can try to figure out a pattern. At least I know that last time it went away soon after. it's better today so hopefully it will be gone tomorrow.

My feet feel swollen and asleep (like pins and needles). My fingertips feel ultra-sensitive and slightly pins/needles.

I also have a terrible metallic taste in my mouth - not really too strong but bad enough I always want a mint.

Update

Wow, it's been awhile. In the past that's meant that generally all is well. Not so much this time - although there is nothing really wrong, either, don't worry!

Today I go in for my Herceptin-only treatment. Then I have 2 more weeks with chemo, then I am DONE with chemo! Hooray!

I have really felt like crap the past few weeks. It's finally worn me down to where I have decided to give up my outside activities until after Thanksgiving. This really pisses me off! My activities have been keeping me going, and I think they still would. I'm not sure this is necessary, but I'm doing it anyway. I have the same feeling I had after Katrina where it was like it was stealing stuff from me. I know it's only temporary but I have kept up so well this entire time it makes me angry to have to quit now.

I feel bitter and angry more and more lately. John thinks I need to talk to someone. I don't see the point. I did talk to our pastor last week. I just need to get through these next few weeks. My guess is the anger is covering for fear of the unknown. I don't really feel like I'm afraid, but maybe afraid just isn't the right word. I like knowing what's happening next, so it's not really fear, but just that i DON'T know. Anyway I don't know how anyone expects me to feel. I have CANCER, damn it. How do you think YOU would feel?

On the bright side, I have been able to sleep a little bit better. On the other hand, it doesn't seem to make much difference - I still feel exhausted.

I had my doctor visit last week and we talked (again) about all the treatments. I agreed to go to the radiologist for a consultation. I still don't think I will do radiation, but I'll listen to what he has to say.

Dr. is familiar with the Finn-Her study and says there are other studies going on that topic. He thinks it shows great promise. But for now the standard is 12 months so that is what he has to go on. He stressed that I could quit at any time, none of it is mandatory. He admitted he didn't know what he would do if it were him, or a member of his family, other than to do more research and make the best decision they could. He says it's all a gamble either way.

So isn't that great? All these years of research and studies and the only thing that's really been accomplished is to put small, well-meaning charities out of business.

I still don't believe an actual cure will ever be allowed to be found. I don't believe any study on Herceptin will be allowed to change the dose from 12 months to anything less. There is way too much money involved.

So basically the update is that it's all a crapshoot. I will either be cancer free or I won't, and it probably will have nothing to do with whether I got various types of treatment or for how long. Pray, everybody!