Cleaning for a Reason

http://www.cleaningforareason.org/

I'm putting this up there in case anyone reads this blog who would benefit from it, or if you know someone who does.

Sadly, I was not able to benefit from it. The information was given to me immediately after my diagnosis. I contacted them but they had a waiting list of over 6 months, which so happens to be the length of typical chemo treatment. Since you can only get it if you're undergoing chemo, it makes me wonder just WHO exactly IS benefiting from it? I was highly skeptical. Sorry, but that's how I felt at the time.

Anyway, I have since heard from a couple of people who were actually able to use the service. So please ignore my doubts. Just realize that it is NOT a given. I do wish the info sheet had mentioned that so I wouldn't get my hopes up, so I want to make it clear here.

I will say it would have been probably my favorite thing ever if I had gotten to use it. The state of my house really bummed me out. I was unwilling to force all the work (trust me, they do plenty of housework on a regular basis, even if their rooms may not be up to my (or your) standards!) onto my kids who were going through their own issues related to my health, along with all the stuff they had to handle in their own lives - they are very busy kids, and keep their grades up, and I just didn't want to do that to them. Sometimes you just have to lower your standards on certain things, so that'a exactly what happened. However, it still REALLY brought me down.

Then at the beginning of December, my son's friend's Mom told me she would like to send her own cleaning team over for a day, as a gift. YESSSSS!!! It was amazing!! Someday when I am able to work again the first expense I am going to make essential is a cleaning service, even if it's only sporadic. I can't begin to explain to you how wonderful it was to have a clean house, if only for a few days (the effects are long gone, now!). What a morale booster!

So if you know someone who is going through chemo - or any other kind of debilitating medical treatments - please consider offering to help them in this way. Whether it's referring them to a service like the one above, or helping out yourself, or donating the service (maybe a group of friends could pitch in?). It will be a HUGE blessing to them and I expect to you as well!

About Radiation

With one week down, I think I can honestly say that radiation is the most depressing treatment so far. It's not difficult - it isn't painful - so far I have no side effects, and don't expect to for several weeks.

I was a little more emotional than usual yesterday anyway from lack of sleep. it made me think about what I was doing in a different way than I have before.

When I went in for my setup, they gave me a shirt to wear each time, so they don't have to give me a new robe every time. I can wear it in or change there. It's basically the same material as a hospital gown, but long sleeved (why?? I don't know) and snaps down the front. So I wear that in, and when I'm in the room I slip off the left arm. Then I lie down on this hard table. I think maybe it wouldn't kill them to put a little cushion there, but maybe there's a reason they can't. There is a little pillow and they put a towel over that. I lie on my back and they put a cushion under my knees. My right hand really has nowhere to go. Yesterday they suggested I hook my thumb in my waistband and that helped. Before that it just seemed to fall off the table and fall asleep, like it has a mind of its own.

After I lie down I reach my left arm over my head and hold onto a handle above the pillow. Good thing I have good range of motion because it could be very painful otherwise! I have to turn my head to the right. Usually I just close my eyes. That's why it's so easy to just THINK about stuff. There is a picture overhead - a very large, 4 section picture of a gorgeous garden scene. I wish I could just look at that instead of to the right, but they won't let me. I wonder what's on the other side of the river. If I remember I'll look there first next time.

Then, the nurses move me around till I'm positioned correctly. I am not supposed to move at all myself, or try to "help" which is the natural reaction. They will move me tiny bit at a time and when they're done it's not always a comfortable position, but it's where I have to be to get it set right.

Keep in mind my left side is entirely exposed at this point. There is nothing there, of course. Just a bigass ugly scar. But still. I am lying there half naked on a cold, hard table while strangers move me around. Having my arm raised like that makes me feel even more exposed and vulnerable. Oh, and then they usually draw on me with a sharpie.

They come in and out of the room - out while they "shoot me" (that's what I call it. I don't know what the term is) and back in to make adjustments and such. Usually they put the CD player on softly. This week it's been Michael Buble, whom I really don't care for but it is relaxing. Today I asked if I could bring my own iPod and they didn't see why not, so we'll see. When it's over - usually less than 15 minutes total - they have to help me up because my stupid underused muscles have frozen in place. Then it takes me a few minutes before I can even stand up, then I am on my way.

Today I just lay there, unable to relax in the position I ended up in, hands falling asleep, nose itching but I can't scratch it, Michael Buble playing a little bit too loudly, half naked on the cold table, and thinking that in some ways this is worse than chemo. Sure, chemo had it's side effects but going to the chemo room was fun, as much as anything like that could ever be fun. We talked and laughed and joked around and took benadryl naps and worked puzzles shared snacks and made friendships.

Even as I type it, I am aware of how ridiculous that sounds! Chemo was anything but FUN! I am not making any sense.

The radiation is just humiliating. The nurses are great - it's not anything to do with them. I guess it's just me.

EDITED TO ADD: I really don't mean to sound so whiny. I really am not, as a general rule. I'm just trying to keep it real here.

Blech!!!!!

I feel as bad right now as I ever did from chemo! Maybe worse because it would be over in a day! This sucks, I am tired of feeling like shit!!

Start of Radiation

Today was my first radiation. I went down after my Herceptin treatment. I was worried about the timing, but even though the room was packed today (they were closed for Christmas yesterday) I was actually out earlier than usual!

I got down to radiation 20 minutes early and they took me right back. They said today was my "long day" as they had to make sure everything still lined up from last time.

I have to lie perfectly still, which I don't do well! I have to hold my "bad arm" up over my head and grasp a handle. Well, my hand fell asleep and I didn't think I would make it the entire time without having to move!

A couple of machine things came down close to me and moved around, taking images and then the nurse would come mark me with a sharpie. This will not need to be done anymore, just today. The nurses were really good about telling me what was going on. They were in the next room but were able to see and hear me and talk to me. They told me exactly what was happening and when.

And of course they are all very nice. I really think it takes a special kind of person to be an oncology nurse.

So I will go in every weekday around 11:00 and it should only take about 5 minutes from now on. Even being my "long day" today, it didn't take long. I got there at 10:40 and was home by 11:00!

I am still debating and researching about Herceptin. I think what I'll do is give it till then end of radiation. That's 5 more treatments. That will mean I've had 26 - half a year - and way more than the 9 in the Finn-Her study! I will make a decision then.

Side Effects Report

I was told not to overdo it especially if I felt great, that I would continue having side effects. I have had a few days of feeling normal and I'm sure I overdid it on those days.

For the past few days the neuropathy was back in my fingers and toes, my skin is super-sensitive and I have had the other side effects that went along with those. Last week after my Herceptin I was more nauseous than usual. Could be because I went out shopping instead of home to rest.

I am not sure which of these are lingering from the chemo and which might be from the Herceptin. I have still not decided whether to continue the herceptin. At least my last heart scan was very good.

I am starting radiation on the 27th, the same day as my next herceptin (skipping a week for a trip).They say I should not have any side effects from the radiation for a few weeks.

Weight Gain

Ever since I started the herceptin I have been gaining weight steadily. I mean at least a pound a week, sometimes more - the first week, I was SIX POUNDS in three days. Total gained so far over the about 16 weeks is 24 pounds as of today.

At first the nurses told me it was from the steroids they were giving with the Taxol (and later, at first, with the Abraxane). That made sense, but as soon as I read that I didn't need the steroids with the Abraxane I asked to stop them (and the Benadryl, you may recall).

Each week, as I got farther and farther from my last dose of steroids, it kept going up. And while my diet is not exactly a weight loss diet, there is no way I would be eating enough to gain that kind of weight!! I mention it each week to the nurses, I am at the point where I almost cry each time, because I KNOW I should not be gaining like this! They tell me it takes time for the steroids to wear off, or it's just from having IV fluids every week, whatever. (I can't remember when my last dose of steroids was but it was at least a couple of months ago. I'm too lazy to look it up in this blog.)

Finally just now I looked up "herceptin and weight gain" on Google. When you look up a side effects list for Herceptin, weight gain is not mentioned. In fact, it says weight LOSS may occur. But when you click on the hits for message boards, it seems that many others are having weight gain they attribute to Herceptin. They, like me, are wondering WHY this is happening if it "isn't supposed to". Many of these women never even had any chemo, just the Herceptin.

I'm not worried about the cause of the weight gain for me. I know it's the Herceptin. There's just no way it could be anything else, a month after the chemo ended (so I am fairly sure it isn't from the chemo itself). I just wonder why they don't list it as a possible side effect when it so obviously is.

Just another thing to piss me off and make me go hmmm.

Last night

I could not sleep because I felt so bad. I got up and went to the living room; I should have taken the time to explain here how I was feeling because now that it's over I'm not sure I can do it justice.

First of all, and what I think people understand the least (and are most offended by) is that my entire body gets so sensitive that it is excruciating to be touched, at all. A hand rubbing my arm feels like sandpaper. My mother-in-law was offended once when I turned down a backrub, and I am sure my husband doesn't understand when I push his hand away from just wanting to touch. (I try to be as polite as possible, but as I said it's very painful, and my main goal is to simply get the hands OFF ME.) A hand resting on my arm feels like it weighs a ton. I wish I could explain it better than that. You could put a big brick on my arm and it would feel the same way.

My entire body feels HOT. I could swear I have a fever of over 105. I don't take my temp anymore because I used to and it was normal. Last night I felt like someone had turned an electric blanket on SUPERHIGH. I throw the blankets off and then of course I get cold and have to get them back, this repeats itself several times through the night when all this is happening (it isn't every night).

Neuropathy, I have explained before. My fingers and toes don't just feel swollen, they are - proven by my wedding ring which is normally loose. But they are also painful. I imagine it might feel something like severe arthritis, but I have not had arthritis so I'm not sure. Last night my legs also felt swollen. This morning they just feel "asleep".

I am uncomfortable in any position. Whatever side I am lying on is sore. Limbs "fall asleep". I just can't find a good spot, so I toss and turn.

Most nights, I also have "restless legs syndrome". I have to continually move my legs. I can not explain it more than that. if you've ever had it, you will know exactly what I mean - if not, you will shake your head and say "huh?".

This is 3 weeks out from chemo, so I am not sure how much is still chemo side effects and what may be herceptin and what may be just in my head (hopefully none!). The Doctor says it takes time to get the chemo out of my system and I can expect more weirdness before it's all over. I hope this stuff goes away soon.

Limbo

I know it's crazy, and I should be used to it by now, but I HATE being in limbo!!

Right now I am waiting to find out if our oldest son gets to go to the Bowl game in Ca with his band. If he does - I am going to go too. It's been a week now and they still have not told him, and the game is less than 3 weeks away!

The thing is I am supposed to start radiation next week. I asked if it would be OK to miss, so today the doctor called me to discuss. He would rather wait to start until after Christmas, when I'm back, than to miss a week of treatments halfway through. He says it's well within the window of 8 weeks after chemo (will in fact be 6 weeks after). He says it's no problem. But I just feel lost and out of control!

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!

Neuropathy

Neuropathy is a possible side effect of at least one of my current medications. I haven't had it before, though. I have it now. it feels like my feet and hands are asleep. It's only mildly irritating but I had to get up out of bed because I couldn't get comfortable.

More decisions

With only 4 more chemo treatments left to go (Actually 3, since I get a week off somewhere in there, but it's 4 weeks till I am DONE!) I have to start thinking of the other decisions I have to make. I've already decided to get the hysterectomy,mastectomy and reconstruction, but I'm not sure when that will happen. My insurance is changing in January and I'm not sure how that will affect anything (I did check that the doctors were on the list!). I'm thinking I might want to start right after Christmas or the New Year. Not sure what I will do first - probably the hysterectomy since I would rather not take the Tamoxifen at all.

I am also now researching Herceptin and if I want to continue. It has a whole slew of bad side effects that go along with it, including heart problems and risk of other cancers (particularly lymphoma). It is also considered the "gold standard" in preventing recurrence of her2+ cancer. So right now I am in the research phase. It's going to boil down to which is the worse risk. So far my heart is doing fine, so they say - it seems to me I am due for another scan and will ask about that at my Dr. visit next week. I get winded so fast it scares me but I don't know if that's my heart or the being so out of shape.

But I suppose I should take one step at a time, so the good news is - 4 more weeks and chemo is DONE!!

Forgot again!

I must be really ready for this to be over; for the second week in a row I forgot to go get my blood work on Monday. Last week I joked that I guess I forgot I was sick. Today, I don't know. It doesn't seem so funny. I remembered yesterday morning at some point but was on my way somewhere and figured I would do it later, always dangerous, because I always forget.

So I need to go up early and then sit and wait while they make sure everything is OK, which it has been every week, but we wouldn't want this to be the ONE week!

Gardening

I'm trying to work in the garden for 30 minutes a day. I don't really watch the clock, but that's about when I feel like quitting. I haven't done too well with it lately because the weather warmed up again and I don't want to go out in the heat. So I'm not disappointed or anything. It will get done when it gets done, or it won't, and that's OK. Like the song says, it's not about how fast we get there - it's the climb.

Anyway, the garden is moving way faster than I am. I haven't even finished cutting the lawn yet and I need to do what I already did, again! Oh well. Like I said, I'm not disappointed.

I do wish people would quit telling me not to do it, then, if I say I am tired. Or tell me to make the kids do it. IT'S NOT ABOUT GETTING IT DONE. I want to do it myself. I LIKE to do it. Yes, it makes me tired, so what? If I don't want to do it I won't. If I want someone else to do it I'll tell them. Quit telling me what I can and can't handle or how I SHOULD feel or what YOU think I should and shouldn't do. //end rant

PS I do have some more pictures, and I will put them up soon. I am making progress, and it makes me feel better. :)

Building up

Looks like the effects are going to keep building up, which not only makes sense but I was told would happen. I think I will reschedule PT so I don't go on Wed. anymore. It was just too much today, although I did do everything. Thank God it's almost over. 5 more weeks.

I am getting way more moody too. While doing my PT I was just thinking about various things and started tearing up. Things that probably people would say they don't blame me for crying over, but I think I have a really good positive attitude and I do not want to cry over these things. And then stupid little things that no one in their right mind would cry over.

Oh, and for some reason I am craving salt. I don't usually like salty stuff, but I am having to salt everything, because otherwise it tastes really bland. The good news is I don't need much. It doesn't take much to make it TOO salty! Weird, huh??

On the bright side I felt better, sooner, yesterday. May be a fluke but I'll take it. But then I don't feel much different today.

Things I want to do after chemo -

go swimming.

eat a fresh, raw, unpeeled tomato.

Chemobrain...

My brain fog is getting much worse. I can't even hold a conversation without having to search for words anymore. I really need someone to be my brains for the next few weeks till I'm done. Any takers?

Shopping

It's going to be hard for me to shop this month.

It's breast cancer awareness month, and I think everyone knows what that means.

Before you read on - go do a self-check. That's how I found mine, and I want to do my part in making others aware. I never thought it could happen to me so I didn't do self checks. I only did it that day because I literally felt God was telling me to. I thought it would never apply to me, just like you probably think it doesn't apply to you.

****************************************************

Back to the topic....you know what that means....

That's right - stupid secret posts by the ladies on Facebook, the appearance of more objectifying statements like "save the ta-tas" and "squish a boob to save a life" (worn mostly, I guess, by people who want to look "hip" - breast cancer being the "hippest" of cancers to support after all - since every breast cancer patient I have talked to despises the statements. Think for just a minute how hurtful something like that sounds to someone who has lost one or two breasts, and are trying to convince themselves that it isn't important because we are not our breasts? ...yeah.), and of course the biggie - stores full of items adorned with pink ribbons.

Breast Cancer Awareness month is not put on by any one group. From their website:

The National Breast Cancer Awareness Month (NBCAM) organization is a partnership of national public service organizations, professional medical associations, and government agencies working together to promote breast cancer awareness, share information on the disease, and provide greater access to screening services.

They are not even about raising money. Wow, really! I would not have guessed that. I walked into Sam's Club and was instantly greeted by rows of products decorated with festive pink ribbons. The entire perimeter of the store was filled with these items. Buy an item and donate to breast cancer research. Sounds great, right? Well, remember who owns the pink ribbon. That is who will be benefitting from my buying that yogurt or pringles or whatever. Donate more money to Komen's sue-happy lawyers so they can knock down even more small organizations? No, thank you.

Then I went to buy some new walking shoes, as my physical therapist suggested. My feet are hard to fit, D width, and I need good arch support. Academy only has one brand that had the D width, so I was trying those on, but the support was not good enough. I worked my way up the price ladder until I reached the last pair. They were really cute with a bright pink N on the side. But then I noticed the ribbon. Sure enough, on the inside, was the name "Susan G Komen". Great. I started to try them on anyway - I mean, I do need shoes. But I was so disgusted I could not even untie them. Guess the shoes will have to wait.

I came home and did some research. "Mush for a Cure" was awarded its trademark in June, not because they won, but because Komen dropped the suit. It was dropped after a flurry of bad publicity led by one of Mush's key people, so while I don't know for sure why it was dropped, I have a pretty good guess.

As far as I can find out, Komen is still filing lawsuits. Worse, they have "people on the street" speaking out saying why they think it's a great idea.

They can still burn, as far as I am concerned, and I would starve before I would buy a yogurt with a ribbon on the label.

***note: I am not against fund-raising during this month. I am not criticizing Komen for doing so. I criticize Komen just for being Komen. Just so you know. :)

Another week down

6 more to go. For real, this time. I think, anyway...

I was shocked this morning when the nurse brought my next baggie and said "here is your Benadryl". I don't know if I mentioned that I asked why I was getting Benadryl and he said I could try without it if I wanted - which I do. Well, apparently he didn't give them that memo. So it was no problem - they pulled it, and she said they wouldn't charge me for it. The lady next to me commented they should charge HIM for it. LOL.

Then a few minutes later the nurse mentioned "this is your Herceptin since you aren't getting Abraxane this time". Funny, the other ladies and I (we all have different doctors) had just been talking about the lack of communication from our doctors. I said, "WHAT!?" She explained that I do 3 weeks on and 1 week off. It is typical, and I actually knew that from reading the message board. But MY doctor had never mentioned it, and I assumed when he said I would do it weekly that I would do it, well, weekly.

So I just said, this better not mess up my end date. The poor nurse looked so upset. I am really sorry that anytime anything happens I let it out on her. I suppose she's used to it, but still. I asked if the doctor would be here today. She said yes, but not yet. I said well, I want him to call me.

As I was getting ready to go, she said he had come in but had a meeting first. Would I like to wait? Damn straight I would!

They put me in a room and I waited about an hour. Thank goodness for Kindle, and I am re-reading The Stand, so time actually passed fairly quickly.

About the Benadryl, he said the nurse hadn't asked him about it. What? Shouldn't HE tell them if there is a change in my orders? Well, since it isn't an official "change" I should have mentioned it to them. What the. Well, OK. Anyway I don't really care anymore. I still felt just as crappy without it, no better or worse. Though I will try again next week with the chemo and see. I just don't want to be taking anything that isn't really necessary.

About the chemo, he did apologize for not making it clear. it is 3 on and 1 off, but it's for a total number of WEEKS, not treatments. So I will still be done the week before Thanksgiving. Phew, he is lucky, because I was not going to stand still for that. :P

I also asked him about the blood test. Some of the other ladies were saying I should be getting it all along to check my cancer cell count. He says no, we expect it to be normal right now. I am on chemo "just in case", and the test doesn't detect "just in case" levels. We are not trying to shrink a tumor, which the other ladies are, in which case it is indicated to direct their treatment. They also do not have breast cancer. Each cancer is different and even BC is different, so many combinations I can't really compare them. Well, that's why I asked, and he understood. They do the test AFTER the chemo to get a baseline, then check me yearly or so to see if it changes.

So I still came home and went straight to bed even though I didn't do the Benadryl. I am getting up at around the same time I did last time, and in fact still don't feel as well. I don't know. Is Herceptin alone, this bad? I don't know about a year of it then! In fact I read that it is generally given for a year "or until side effects can no longer be tolerated". Hooray. For now I can't really determine which side effects are form Herceptin or chemo. Luckily I will be able to soon. Somme of the side effects are -

• physical changes in my nails - they are all stripey from side to side, and have stripes top to bottom that make it look like I scraped them on something (I didn't). If I push on them, they hurt. They are very hard and brittle. The skin around them is very dry and flaky. I keep biting the flakes off and making it worse. Need to keep up the lotion.
• mouth sores - not enough to use that nasty magic mouthwash, but enough so I notice. Ironically I didn't have them at all before.
• depression - or more just a general weepiness - I cry about everything and feel like crying over everything else. Again, I will not add to the cocktail by taking anything. Plus I tried a couple different kinds before and they were horrible. I'll live with it, thank you very much.
• My hair had been growing back in - thick and dark. It is almost 1/2 inch long and I was even waking up with "bed head" and having to use the baby hairbrush I got in my goodie bag back in the beginning. Well, it is falling out again, which I expected and am not really upset about.
• constantly running nose, every once in awhile getting all caked up and clogging me up. Annoying and gross.
• bone aches.
• Weight gain. Turns out it's not just the steroids I am no longer on. I am only to worry if I "gain more than 5 lbs in 24 hours". I am almost halfway to where I was last summer before I started losing, and my stomach is way poochier than even then. Good thing I still have my fat pants, Woo hoo.

All of these are completely normal.

I never got around to writing about all the supplements I am taking. They really helped me through the last dose of Adriamycin and the Taxol. I have gotten really bad about taking them, and feel worse. I can't help thinking there may be a connection, ha. I pledge to do better about taking them - starting tomorrow, since I still feel a bit too queasy to do it now.

6 more weeks.....

Secret Garden

I have a garden in the back. It's separate from the rest of the yard and I turned it into a garden area when we moved here. Katrina killed it and it spent a couple of years as a dog bathroom/digging spot before I worked on it again. It was my therapy when Mom was sick and after Dad died we hired a landscaper to fix it up after I neglected it the summer he was sick. It was gorgeous! I don't know that I ever took any picture after it was done, though. I have a bunch of "before" pictures, but no "after". You'll have to take my word for it.

I got sick right at the beginning of spring gardening season, and I never did a single thing back there. I think I had Evan cut the grass a couple of times over the summer, but nothing else. I didn't have any energy, and I honestly didn't care. A while back I lamented what it had become. John suggested we spray roundup on the whole thing, maybe first digging up any plants I would like to try to save, then starting over from scratch. I admit I agreed. Again I didn't really care. I was just sick of looking at it.

But then when I got my Kindle I found I could download old classics for free. One of those classics was "The Secret Garden". Have you ever read it? You should. It's really good. If you have read it you will understand why now I don't want to spray Roundup. I want to try to save it myself.

I will probably do the Roundup on the fountain, once I get cleaned up around it. It's full of torpedo grass, and I don't know of any other way to get rid of it. But I will dig up the plants in and around it, first. The rest of the place I will just work on at my own pace. At least the growing season is over so I should be able to keep up with it now.

I finally got started today. The weather was finally cooler and I felt pretty good. I started by taking some "before" pictures.


Bottom right there is a sidewalk going off to the right. See the red thing towards the lower left? That is a ceramic mushroom at the edge of the fountain you can't see. The white plastic thing to the right of that is a solar lantern, also at the edge of the fountain. There is a mimosa tree that isn't supposed to be there (much as I love mimosa trees). The tree on the right side belongs there, but was blown sideways in the tropical storm we had a few weeks ago.

The elephant ears are on the other side of the fountain. They came from my Dad's and I really want to keep them - I don't have to save all of them; they do reproduce pretty well on their own. The pot down on the bottom is on the patio on the edge of the fountain.

Here is what I got done today. I just used the weed whacker on the grass starting on that one side, then raked it up, put it in a trash bag and actually PUT the bag in the trash can. Hooray me! It doesn't look like much but it was a little bit over the line of overdoing it for me. The shower afterward sure felt great, though!

Will I be able to keep it up? We'll see. But I still want to try.

I only get one wish?

LOL! John found this somewhere and sent it to me. I think next time I see this posted I will answer something like this.

I believe many people don't really think before re-posting something that looks good at first glance. I would like to see this meme go away and never come back. I have never commented when someone has posted it, because I believe they mean well and I don't want to offend them, but I am so tired of seeing it lately that I'm about to start.

My first impression on that meme is that it's pretty nervy for anyone to presume to speak for an entire group of people. Period. Remember, at the time I had not been diagnosed. I suppose at first I thought that someone without cancer had no business speaking for someone with cancer. I still feel that way. But I also feel that no one should speak for anyone. I especially feel that way now. Even now that I am "a person who has cancer" I still won't speak for all of us.

Basically if you are "a person who has cancer" and you agree with that meme, then more power to you! Speak for yourself - don't speak for me! Sure, I want to survive. More than that I want to LIVE. Can you even begin to understand the difference? I have lots and lots of wishes, and while survival is certainly one of them, it is not even anywhere close to the highest one on the list. Cancer is not the only thing in my life and it isn't even the biggest. It's just a part of life right now. You do what you need to do and go on with life.

This is one of my favorite Bible verses. Denise, remember this one?

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Trust me, it's relevant to this post.

I would really like to rewrite that meme, specify that it's written by ME and say how *I* feel and that people should speak for themselves and not just copy and paste. LOL, I bet it would be viral in no time. :P

Mother of the Year

She is not me.

Something to Think About.

That stupid cancer meme is going around on Facebook again. When I say "stupid cancer meme" I mean the meme itself is stupid, not "stupid cancer" like it says (although I am not at all opposed to calling cancer stupid).

If you haven't seen it, it goes something like this:

Stupid cancer. We all want a new car, a new phone. A person who has cancer only wants one thing... to survive. I know that a lot of you "who think you're too cool" probably won't re-post this. But a very little amount of my friends will. Put this on your wall in honor of someone who died of cancer, survived, or who is fighting against it now.

I have a lot to say about this stupid little bit. At first glance it looks fine, right? I mean, no one likes cancer, right?

I have disliked this piece ever since the first time I saw it. For the record, I dislike every one of these things that try to guilt you into re-posting it. For that reason I hardly ever re-post anything at all, and then only if it doesn't have a guilt trip attached to it. So it's really not that I "think I'm too cool". Insert eyeroll here.

But I've hated this one since the first time I saw it, which happens to be way before my own diagnosis. Can you figure out why? Really, before I go on, I would like you to try. Read it over, and let me know what you think. If you think I'm wrong, that's OK. Let me hear it.

The specialist visit

The visit went great! I really liked the doctor. I got a lot of great information to help me make my decisions, and she talked to me like a human being (not that Dr. M doesn't! But I still remember Dad's doctor...jerk!). If I get the surgery, I want her to do it. She said my regular gyn. could do it, but given that he thinks it's a bad idea I just don't think I would want to. Plus she is a specialist.

No decisions yet. Lots of info still to get. But I think the hysterectomy is definitely a go. I am at high risk for ovarian cancer due to Mom's having it AND my BC. And if I get my ovaries chopped out -- no tamoxifen!! Yay. She said the stuff I would take in that case has far fewer side effects.

I am very satisfied with this visit and look forward to getting on with it. :)

Specialist

Today I'm finally going to see the Oncologist-gynecologist. I'm hoping to get enough information to be able to make some decisions regarding surgery. I also want more info on the drug they want me to take starting when chemo is over, for 5 year - tamoxifen. The more I learn about this drug, the more I don't want to take it! Articles like this one don't help any. Don't get me wrong - I don't want you guys to stop sending me articles. None of this is news to me. It just really makes my decisions harder - which is probably a good thing. I want to make informed choices. I think my doctor has already figured out that I'm not going to just sit back and do whatever they say!

Anyway - I'll post again after I get back.

Greasy Hair

My hair is growing back. I wasn't sure at first - but now it's obvious. And the best part is, it's not all gray! Whoop!!!

Of course they tell me it may fall out again from this new chemo. I think it's been enough time, but I'm not going to worry about it.

I was really sure it was coming back tonight when I went to rub lotion into it. I've been putting a coconut oil lotion on my head for the past couple of months. Coconut oil is supposed to be really good for the hair and scalp. It feels so cool and good - I was actually thinking the other night that I would miss doing that when my hair was back!

But tonight after rubbing it in, for the first time, I am left with - a head full of greasy hair! Usually it all rubs into my scalp and you can't even tell it was there in what little hair there is.

But tonight it's all greasy. Even if it ends up falling out again, that makes me smile.

4 down. 8 to go.

I wonder what would happen if I just didn't go back.

Disclaimer

I finally decided to "go public" with this blog. So I want to make the disclaimer that this blog is full of TMI, rants, etc and it's possible that something might offend someone. Please keep in mind that something I write in the heat of an emotion is influenced by several things - chemo, pain pills, or just plain momentary emotion! If there is something you think is about you, it probably isn't. If it is, unless I spoke to you about it specifically it's just a fleeting emotional outburst that I let out and got over. I don't want to edit or soften anything I write here because it's where I "get real" about all of this, so to speak. So with that said - read on - and feel free to comment if you like! :)

Chemobrain

Chemobrain has been the worst part of this I think. My mind is foggy all the time (though better now than when I was on adriamycin, WAY better!!), I say the wrong word, and I forget things. Sometimes important things. The past week I have messed up a couple of really important things for my kids. I know life goes on and it's not such a big deal and they forgive me and all that. But I am their mother and they count on me and I hate that they can't. I hate that my daughter cried herself to sleep over what I forgot for her. Luckily her issue was solved by a late night trip to Wal-Mart, who had the product she had been reminding me every day for 2 weeks to pick up. I shouldn't be so hard on myself but then again when I am reminded EVERY DAY for 2 weeks and I still forget, it's upsetting. I write things down but then I forget to look at the list, or forget to bring it with me, so what good is it?

Failing my kids is a really big deal to me. It hurts them even if it's not really a huge deal in the long run. Let me stress that THEY are not holding it against me - I am. It's just not the mom I want to be, even though I know I should not beat myself up and that it won't last forever.

Stupid things like saying the wrong word is just plain embarrassing. Also misspelling words and bad grammar. I admit I am not even trying to use proper grammar in this post. You can see how bad it is! I read over my old entries last night and was noticing all the errors. The bad part is, I took extra time to proofread! Ouch. Maybe most people wouldn't care, but I do care.

BILLS!

I've been steadily getting bills now, some that date from the beginning of all this. I have no idea why they wait so long to send bills, then they get really irate and say it's 90 days past due when you haven't seen a bill before this! As far as I knew they may have been paid already since I didn't hear anything! WHile we were on vacation in July I had a message on my cell from the surgeon's office, for example. She said my bill is past due and I need to call right away to arrange payment. I was surprised since I hadn't seen a bill from them at all. I called back the next day and the woman who answered was apologetic. She said the woman was not supposed to call (personally, I thought she sounded a bit threatening) but just go through the bills, which HAD NOT been sent. They would be filed with insurance and I would be notified if there was a balance. LOL, I got the impression that "Summer" was no longer with them. Anyway now it's September and I still have not gotten a bill from them.

I did finally go through all of my EOBs that have been piling up. I had been sticking them in a box. Now I used my 3 hole punch on them and put them in date order in a binder. The EOBs alone are over an inch thick already! I did the same with all bills, whether paid or unpaid.

When I added everything up, it totals almost $1000 OVER my max out-of-pocket. So before I start paying everyone, I put a call in to my insurance co to see what's up with that. I am waiting to hear back from them - hopefully today.

I used to be a CSR for the health insurance agent and I was the one who would call the companies on behalf of the insured. I dealt with health insurance issues on a daily basis and knew how each kind of policy works. What we have is a new one on me and I am still confused by how it works, although I am getting a better understanding. What I do know is that co-pay doesn't go against the max out-of-pocket (Whoa, I hope the PT doesn't need a $20 copay every visit!!!), and that once I meet my max I should not have to pay anything BUT a copay (not everything requires a copay). I am still not sure exactly what DOES require a copay but they are supposed to collect it at the time of visit and it isn't more than $20, so I know that is not part of this mixup.

It's appalling to me to see the amount that is "written off" for those who have insurance. For instance, each chemo treatment is around $3000. All but $800 is written off. If I hadn't met my max I would then pay 20% of that. Yet the office says they don't take cash patients. Wouldn't it be in their best interest, as long as the patient HAS the cash? But then I've heard that uninsured patients can usually get the provider to accept what insurance would pay. Not sure if that is true. Why not just make that the charge in the first place if that's what they'll accept?

Anyway, I set aside money to pay all this but I am not going to pay more than I have to! So sorry if you haven't gotten your money yet but if you'd sent out the bill when the service was provided, you would have had it months ago!

Physical therapy Evaluation

I am so excited about PT! I was evaluated today. I thought I was just going in for some help building back up. But they had an extensive questionnaire about any pain I feel at any time. I told them I had pain in both shoulders and my right hip.

So she was moving and poking and prodding and asking questions. Because the hip pain hadn't happened in awhile (probably because I have become so sedentary!) I completely forgot that it started after my 3 month pregnancy bedrest in '01, and was so bad that a 30 minute Wal-Mart trip would force me to recover for the rest of the day! It was hurting a little bit this morning or I would never have told her about it at all.

What she told me is that my left hip is actually higher up than the right one! Also, my right leg is slightly longer than the left (she would have expected it to be the other way around). My right hip is tilted out of place, slightly forward. She did some very gentle exercises to move it back into place, and it worked. We'll do those for awhile and eventually it will stay in place. I didn't feel much different walking afterward, but my hip no longer hurt!

Of course she has no idea what caused it. I had hip dysplasia as an infant but was released from medical checkups at age 13. It's possible the triplet pregnancy caused it. I had asked the doctor about it back then and was told it was "normal" - I gained a lot of weight and was on complete bed rest for 3 months. I asked about it sometime after and was told my body was recovering from the bed rest. I told the lady today that I have felt like I was still recovering from bedrest, in many ways, 10 years later!

So I should have pushed for more answers! I can't believe my legs have been different lengths all this time and nobody noticed?? How did *I* not notice??

It's funny, my Grandmother always walked slightly lopsided. More so as she got older. I wonder if she had the same problem with her legs? I wish she was here to ask. I would also love to ask my Mom more about the hip problem I had as an infant. I had to wear a cast on both legs, with a bar between to hold my legs apart, for a year I think. Because of that it took forever for me to learn to walk. Instead I learned to scoot quite well. I had to go in for yearly checkups until I was 13.

I am very excited to continue the PT. we're going to start with 3 days a week and work on the shoulders too which she believes is a posture issue.

Abraxane

The total treatment time today was less than 2.5 hours. I still needed Benadryl. I'm not sure why. I had read that it isn't needed with the Abraxane and she said he was giving it "just in case". Then she said they give it with the Herceptin anyway. There was also an anti-nausea drug. SO I need to ask the doctor if these are really necessary.

Of course I got really loopy from the Benadryl. I could not sleep because I had restless legs. I came home and took a nap and feel really drugged. I didn't feel like this after the Taxol; I was able to function and even go to meetings on Tuesday night. I definitely wouldn't be able to do anything like that tonight, and it's from being super groggy.

I won't have to wait till 1:00 from now on. They had the drug at the Covington office and didn't get it to this office in time. From now on they will have it here and I can go first thing in the morning again. Maybe I seem abnormally groggy right now just because I got it later in the day? If that's the case I should feel fine in a couple of hours.

Questions

Yes, I'm awake again at 3:30 am. Not steroids this time - night sweats. Hooray for forced fake menopause!!!

I start the new chemo in the morning. Or -- it was supposed to be in the morning. They called yesterday and said the med has to come from Covington and it won't be there until 1:00. I asked "how long will it take? I mean actual time, from walking in to walking out". She said 2.5 hours. (which, IME, probably means closer to 4!) I told her I need to be home at 3:30 for the kids. So she said ok, come in at 11:00 and we'll do the Herceptin and premeds first so at 1:00 it won't take as long. OK, good deal, let's do that.

Now at 3:30 am I am thinking: I thought the abraxane doesn't require premeds? If I find out I'm getting steroids I am going to be PISSED! Then again, he did say I would need a test dose first just in case I was reacting to the actual drug and not the carrier. So maybe it's just this one time? I Googled it and found where some say they are tired the day after treatment if they don't take steroids. I am willing to try it without and see how it goes. Like I said before, not much could possibly be worse than how I felt ON the steroids.

The other question is: Will the med not be there till 1:00 every week? Because I don't really like that either. I guess I can tolerate it if we can start the herceptin first, but still, I like getting it over with in the morning. I really enjoyed going in at 8:30 last week and being out by noon. And why can't they get the med in on Monday afternoon and save it? Will it spoil or something? Confused here. I am getting my way once again and then getting confused because it isn't going as I had planned. Troublemaker! That joke is getting a bit old, by the way. Are there really so few other patients that want some say, or have questions about their treatments?

******

Google confirms that once you mix up the abraxane with the carrier, it only lasts 8 hours. So I guess it's afternoon treatments from now on, but I will still ask if they can't get it any sooner than 1:00. Why Covington? Why not somewhere here in Slidell? Although it should only take 30 min after that so as long as they get it there when they say they will - a BIG IF in my opinion (we shall see), it would be OK.

I am also now wondering about this "human albumin". Can it cause disease? Thinking of the AIDS etc that was caused by blood transfusions before proper testing was in place. I am a little bit leery, although surely it's better than the castor oil and alcohol used with the Taxol. And hasn't it been years and years since disease was proven to have spread that way?

Ugh. I just SO HATE having myself voluntarily injected with toxic crap. Usually I have not even been reading the inserts or information, because I have to do this so it's probably just best not to know!

ABRAXANE

Active Ingredients

PACLITAXEL

Inctive Ingredients

Albumin, Human

6.3 Shelf life

Unopened vials: 3 years Stability of reconstituted suspension in the vial: After first reconstitution, the suspension should be filled into an infusion bag immediately. However, chemical and physical in use stability has been demonstrated for 8 hours at 2°C-8°C in the original carton, and protected from bright light. Alternative light-protection may be used in the clean room. Stability of the reconstituted suspension in the infusion bag: After reconstitution, the reconstituted suspension in the infusion bag should be used immediately. However chemical and physical in use stability has been demonstrated for 8 hours not above 25°C.

TAXOL

Active Ingredients

PACLITAXEL

Inctive Ingredients

polyoxyethylated castor oil,alcohol

Stupid Steroids

I am SO SO happy I won't need steroids anymore. I sure hope they don't find some reason to give them. Here's why.

It is 2:15 AM on Friday night. On Tuesday I had a double dose of steroids because of my reaction. Tuesday night I did not sleep at all

Wednesday I napped for one hour in the morning

Wednesday night I got 3 hours of sleep

Thursday - no nap, had trouble sleeping at night, ended up with about 5 hours total

Friday took a one hour nap

Friday night -- well, like I said, it's 2:15 AM!

The thing is it's NOT just insomnia. I am wide awake. It may as well be daytime. I have just finished 2 loads of laundry and a sink full of dishes.

I did try lying down, just in case it helped. I was tossing and turning so much I got up rather than wake John.

I know it's not healthy to not sleep. It makes me wonder what is so freaking important that I had to have the steroids in the first place? I would rather be sick for a couple of days. I guess I will continue in my role as official troublemaker and demand the reason if they want to give me any more.

Physical therapy

At the doctor yesterday I asked about exercise. Before I was diagnosed I had been starting to get back into decent shape (which is probably partially responsible for how well I've taken the treatment so far). After surgery I just let it go again. Now if I walk across the house it gets my heart rate up. One of the worries of chemo is damage to the heart, and I get tested regularly to be sure mine is up to the task, so I was really worried about it.

So the good news is I CAN exercise - in fact he set me up for physical therapy so I can ease into it properly. I'm excited! I have an appointment for next Wednesday. The only bummer is that I can't swim, which is my favorite exercise (and our club has an awesome indoor saltwater pool). John was concerned about germs in a public pool, and the doctor agreed. So the pool is out, but only till chemo is over, which isn't too much longer - hooray!

This weekend we're going up to visit our college son. We do this every September - it's Parents' Weekend and we love to go to the game and sit with the band. I was afraid I wouldn't get to go this year. I'm so happy that I am taking the chemo well and can actually DO things!

Abraxane

Abraxane - that's the one I looked up. It has no side effects, requires no pre-meds (NO STEROIDS!!!!!) and has a much lower infusion time. So where do I sign up?? LOL!

I mentioned it to my doctor today and we're going to go with it! He says it's actually the same drug as Taxol. The allergic reaction is due to the carrier for the drug. it doesn't dissolve in water so they have to use chemicals. The Abraxane carrier is much easier on the patient. Unfortunately it costs more for whatever reason. Insurance won't pay for it unless there is some reason to, such as having a reaction. So, I'm in! I'm actually excited. There is a tiny chance I reacted to the actual drug so they have to give a test dose. But no one ever reacts to the drug so I'm hopeful. And we don't have to start over with 12 weeks - will do 9 or 10 since I had 2 weeks of Taxol. So I'm still pretty close to the original schedule of being DONE by November.

He's referring me to an oncologist gynecologist. I am really torn on having surgery. Dr. C (regular gyn.) is against it. I am for it. Dr. Mc is for it. The other one will probably be for it too. I need to do more research.

Bad reaction

Today I had an allergic reaction to the Taxol. It's not uncommon; in fact, they start you out with a dose of Benadryl. Then you sleep through the rest of it, LOL! I have had 2 doses of it before today. First time, no reaction. Last week I did react but they thought it was from my cold, said it didn't "fit" the normal reaction. They gave me more Benadryl, slowed down the pump and it was fine. Today it happened exactly the same only worse. As soon as the pump started first I saw lots of spots before my eyes like things swimming. Then my face POOF got really hot. Then it was hard to breathe. All within seconds. I didn't have a bell on my table to I asked the lady next to me to ring her bell. She was confused of course but did ring it and meanwhile I shouted for the nurse. She ran right over with a bag of benadryl and unhooked the Taxol. The doctor and several other nurses ran over and the doctor was telling them to grab an epipen and stuff. They didn't have to use that though because the Benadryl did the trick. They told me my face was beet red. My BP went way up to 188 over whatever. Within a couple of minutes it was back to normal though. It got better almost as fast as it got worse. But let me tell you it was SCARY!!! And I felt really sorry for the new patient next to us who had to watch it! She is freaked out enough just starting out. And we had been telling her how much easier it gets.

So now, I can't take any more taxol. it's too dangerous. There are other options and I have a Dr. appt on Thursday to discuss. The one he mentioned has more side effects. I was really excited to not have any!!

But I got home and started researching. I don't get on the message boards for this much because it's depressing to me. But they are a good source of info. So I typed "alternative to Taxol" in the search box and found one to ask about. They said there are NO side effects, it requires NO pre-meds (for Taxol I am on steroids, Benadryl, and Pepcid which take over an hour before I can start the chemo) and takes only 30 minutes to drip weekly! So I am thinking WHY would they not START me on something so magical?? Later someone said it is newer (though not NEW) and costs more so insurance doesn't like people to start on it, in fact won't pay for it, but that if you had a reaction to something else they will usually approve it. So I am definitely going to ask about it. I can't remember the name; I saved the page on my other computer, so I will post it here when I can get it.

So this week I essentially had LOTS of Benadryl, LOTS of steroids and a dose of Herceptin. And a scary time! I sure hope that doesn't happen again.

I was also talking to this new patient about the surgeries. Her son is an OB-GYN and he insisted she should get the complete hysterectomy, plus a double mastectomy even though it was only in one. So she did, and there was supposedly nothing in the other breast, but they tested it anyway and it WAS there, just not visible to the other tests yet! So now I am SURE I want to do the other one. Might as well, since they have to match it in reconstruction anyway. I told her my GYN was against the hysterectomy and she asked who I use? It's the same one she uses and he told her the same thing! I really think he is just old school (he is older). Back in those days they didn't think removing it would prevent it, it would just show up elsewhere. Now, they don't want you running around removing body parts for no reason but in my case it is definitely indicated. The oncologist said he would refer me to a GYN-oncologist. this lady saw him too and says he is great. So she had all her surgeries done before starting chemo. I am now wondering if I should put the rest of chemo on hold and do the surgeries first? I'll ask that on Thursday. Especially if there is a chance it's in the other breast already.

Cold and Flu Season

I think it's going to be a long one. I'm still trying to recover from the cold I caught 2 weeks ago. It turned into a sinus infection, which luckily I realized in time to get meds before the holiday weekend/Tropical storm. I am on Day 3 of the 5 day Z-pac and not feeling as much better as I should, so I may have to get more meds. Grr. I hate taking antibiotics because they always cause yeast issues. This time I am keeping myself well dosed on probiotics and haven't had any issues there so far.

This morning in church it seemed like all I could hear was other people coughing and hacking. Even the pastor had a cold, I could hear it in her voice. I tried not to hug people but they are all so friendly. I may have to stop going for now, if a simple COLD can wreak this kind of havoc on me while my white count is awesome! I'm really torn, because I need to get out and do stuff!

The whole family is going to have to get a flu shot which I also hate. I'm not sure if I can get one while on chemo. I can't remember what they said. Ugh, I don't want to! *pout and stamp feet*

Other than that - still no side effects. I wasn't sure at first, since they said side effects could include flu-like symptoms. So maybe I actually have had some and just don't know it. However, I feel that if I don't know I am having them, they don't count!

Week 3 coming up.

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.