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