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!