I heard this the other night when they were talking about Olympians supporting charities. I am in no way trying to minimize the idea but this one caught my ear and I just don't get the logic. Apparently "Pink Culture" is THAT ingrained. Is it just me? My son thought I was crazy, like why would it bother me. If you're trying to honor your friend, wouldn't it be natural to support awareness for THEIR disease?
SMH
Brady Ellison – Archery
Charities/Philanthropies:
Susan G. Komen for the Cure
Is there a reason why you chose to support those specific organizations?
I have a campaign I do with my archery called X Out Breast Cancer. I had a coach die of stomach cancer and I wanted to give something back so I chose Susan G. Komen.
Read more: http://www.looktothestars.org/news/8707-exclusive-team-usa-olympians-talk-charity#ixzz221vYs6J4
Sunday, July 29, 2012
Friday, July 27, 2012
Sometimes ...
... it seems like other people are inside my chemo-addled head, able to say what I am thinking and feeling so much better than I ever could.
Click here
Click here
Monday, July 23, 2012
Then Again...maybe not??
I feel like crap again. I was fine until mid-afternoon when it suddenly hit me for no apparent reason. I am so discouraged right now.
Monday, July 16, 2012
it's the Tamoxifen
I was off Tamoxifen for 2 weeks. I was feeling mostly good. not great - but mostly OK. Today is Day 3 and I feel like total crap again. If how I am feeling is a side effect of anything (and not just the weather or something) it is definitely the Tamoxifen.
I won't be taking it again. I may look into the alternatives but they are supposed to have even worse SEs.
According to Dr. L, the D3 improves my stats even more than the Tamox. Rationally, I am not worried. Emotionally, I am terrified. But realistically, it's all a crapshoot. There is no reason to worry when you're damned if you do, damned if you don't.
All i *DO* know is that I can not live like this. So, goodbye, Tamoxifen.
Once I feel better again from this, I may go back and try the herceptin again. However, with just 11 more weeks to go I am not worried about finishing that either.
I won't be taking it again. I may look into the alternatives but they are supposed to have even worse SEs.
According to Dr. L, the D3 improves my stats even more than the Tamox. Rationally, I am not worried. Emotionally, I am terrified. But realistically, it's all a crapshoot. There is no reason to worry when you're damned if you do, damned if you don't.
All i *DO* know is that I can not live like this. So, goodbye, Tamoxifen.
Once I feel better again from this, I may go back and try the herceptin again. However, with just 11 more weeks to go I am not worried about finishing that either.
Wednesday, July 11, 2012
Impressions
Seen in my FB feed today:
I've wondered what impression my physical appearance may give people. Let's see.
* wardrobe: Shorts and a T-shirt, most likely. Depending on which doctor's office it is, I may be wearing my husband's button-front shirt (with snaps for easy access) and no bra. Therefore I look like some deformed Franken-lady with one saggy boob. If I am feeling particularly dressy I may have on pants or a skirt. If I am wearing a bra, the left side is lumpy and misshapen due to the sock I have stuffed in so that small children don't comment. I used to be sure to choose a shirt that didn't make the lumpiness so obvious, but that doesn't bother me as much as it used to and frankly takes way too much thought and effort. I am a one-saggy-boobed woman, after all.
* Hair: Ever seen a boy's hair as it grows out from a buzz cut? it's shaggy and uneven. There's really no point in trying to trim it until it reaches a reasonable length. This is the Stage Most Likely to Attract Snide Comments from Teachers, Church Ladies and Grandmas. Well, that is the stage my hair is in. Only it's curly. Unreasonably curly. Pieces of it are not curly at all, while others are curling back into themselves. As you might imagine, this makes it look even shaggier than it otherwise would look. I have tried "doing something" with it, but it refuses to be tamed. There is nothing I can do other than to go with it, and wait for it to get long enough to be worth styling. Getting a style at this point would be impossible (or at least require larger amounts of gel than I am willing to use); getting a trim would just prolong the agony. Most days, I just run a brush though it and not care what anyone thinks. On particularly bad hair days, I go back to the trusty old bandanna.
*Shoes: Confession time - I hate shoes. The perfect life would allow barefootin' all the time. Since this is not allowed in real life I do own a few pairs of shoes.
1. comfy sneakers for when I have lots of walking to do.
2. Slip-on leather flats for church. They are getting a little bit worn, but I don't care. They are comfy and my wide feet are not used to that so when I find one that works, I wear it till it falls apart.
3. Crocs brand rubber sandals. They are like flip-flops but don't go between the toes. I can't stand having anything between my toes. They are also getting quite worn. The color is mostly rubbed off the part that goes across my foot, and the area just above the toes is still stained from that time I had to walk through the mud. I really should try to clean it, and I'm sure it would come off, but I only ever think about it when I am on my way somewhere, look down and say "oh hell, I forgot again".
So there you go, I did re-think it and I am satisfied with how I look for the time being, even if you are not.
Rather than spend so much time and anguish on the physical appearance of random strangers, might I suggest to this person that they look into the proper use of the various forms of the word "there"... just a (re) thought!
So I'm at the doctors office waiting room... People really do need to rethink there wardrobes .....hair... And shoes!!!
OMG!!!!
I've wondered what impression my physical appearance may give people. Let's see.
* wardrobe: Shorts and a T-shirt, most likely. Depending on which doctor's office it is, I may be wearing my husband's button-front shirt (with snaps for easy access) and no bra. Therefore I look like some deformed Franken-lady with one saggy boob. If I am feeling particularly dressy I may have on pants or a skirt. If I am wearing a bra, the left side is lumpy and misshapen due to the sock I have stuffed in so that small children don't comment. I used to be sure to choose a shirt that didn't make the lumpiness so obvious, but that doesn't bother me as much as it used to and frankly takes way too much thought and effort. I am a one-saggy-boobed woman, after all.
* Hair: Ever seen a boy's hair as it grows out from a buzz cut? it's shaggy and uneven. There's really no point in trying to trim it until it reaches a reasonable length. This is the Stage Most Likely to Attract Snide Comments from Teachers, Church Ladies and Grandmas. Well, that is the stage my hair is in. Only it's curly. Unreasonably curly. Pieces of it are not curly at all, while others are curling back into themselves. As you might imagine, this makes it look even shaggier than it otherwise would look. I have tried "doing something" with it, but it refuses to be tamed. There is nothing I can do other than to go with it, and wait for it to get long enough to be worth styling. Getting a style at this point would be impossible (or at least require larger amounts of gel than I am willing to use); getting a trim would just prolong the agony. Most days, I just run a brush though it and not care what anyone thinks. On particularly bad hair days, I go back to the trusty old bandanna.
*Shoes: Confession time - I hate shoes. The perfect life would allow barefootin' all the time. Since this is not allowed in real life I do own a few pairs of shoes.
1. comfy sneakers for when I have lots of walking to do.
2. Slip-on leather flats for church. They are getting a little bit worn, but I don't care. They are comfy and my wide feet are not used to that so when I find one that works, I wear it till it falls apart.
3. Crocs brand rubber sandals. They are like flip-flops but don't go between the toes. I can't stand having anything between my toes. They are also getting quite worn. The color is mostly rubbed off the part that goes across my foot, and the area just above the toes is still stained from that time I had to walk through the mud. I really should try to clean it, and I'm sure it would come off, but I only ever think about it when I am on my way somewhere, look down and say "oh hell, I forgot again".
So there you go, I did re-think it and I am satisfied with how I look for the time being, even if you are not.
Rather than spend so much time and anguish on the physical appearance of random strangers, might I suggest to this person that they look into the proper use of the various forms of the word "there"... just a (re) thought!
Tuesday, July 10, 2012
New Report
Today I felt much better. Today was also the day I was supposed to get treatment, and I didn't. I am guessing there is some correlation. I'm going to start back on the Tamoxifen on Friday and see what happens. I always felt better if I skipped a week of herceptin so I am guessing that's the deal.
So, yay! I feel better for now. :)
So, yay! I feel better for now. :)
Friday, July 6, 2012
Daily Report
I think I'll just add to this one unless there is something different to tell.
Thursday: I still hurt like hell today. I was able to go out to the store, but it was rough. It's worse when I've been sitting and have to get up. It took me what seemed like forever just to lift my leg up onto the bed when I lay down.
I called the doctor's office and the nurse or doctor is supposed to call me back, but as far as I know they didn't yet.
I sent a message to the nutritionist asking if there is some supplement I can take to help. Got an "out of office for vacation" message.
Sunday: No, I didn't update each day. What is the point? Friday: still hurt. Saturday: still hurt. Sunday: still hurt.
I do think it's a little bit better overall. The worst is still when I stand up, no matter how long or short a time I was sitting.
I did take my son out on Friday to buy stuff for his dorm. We were out for 5 hours. It was not excruciating, but I did have to push the cart and lean on it like a walker. So at least I can function if I need to. Yay?
Thursday: I still hurt like hell today. I was able to go out to the store, but it was rough. It's worse when I've been sitting and have to get up. It took me what seemed like forever just to lift my leg up onto the bed when I lay down.
I called the doctor's office and the nurse or doctor is supposed to call me back, but as far as I know they didn't yet.
I sent a message to the nutritionist asking if there is some supplement I can take to help. Got an "out of office for vacation" message.
Sunday: No, I didn't update each day. What is the point? Friday: still hurt. Saturday: still hurt. Sunday: still hurt.
I do think it's a little bit better overall. The worst is still when I stand up, no matter how long or short a time I was sitting.
I did take my son out on Friday to buy stuff for his dorm. We were out for 5 hours. It was not excruciating, but I did have to push the cart and lean on it like a walker. So at least I can function if I need to. Yay?
Wednesday, July 4, 2012
Daily report
Bones still hurt. Not quite as bad as last week but enough to keep me down and miserable. Let's see, this is day 7.
Tuesday, July 3, 2012
Making Decisions
I am the world's worst decision-maker for any occasion, from ordering dinner to painting a room to about anything you can imagine. So I know I am really wishy-washy on the whole medication thing. I wish I knew for sure what to do. Sometimes it's cut and dried: have a headache=take an advil. Nausea meds give me headaches that require a pain pill, therefore I would rather put up with nausea.
Here are my choices, as I see them:
CHOICE #1. Continue taking the medications, as directed, for the length of time directed.
Pros:
Statistically my chances of recurrence go down.
I have only 12 weeks of Herceptin left.
Cons:
Depending on who you listen to, the statistics are not that great
They cause side effects of nausea, sore bones, headaches, which are getting worse as time goes by.
I lose a day each week for treatment on Tuesday
They could cause other kinds of cancer
Herceptin causes heart damage which may or may not be permanent
I'm not sure which of the meds is causing what. The nurse says she has heard complaints about both from people who are taking only one. So it could be both that are causing the bone pain, which is the worst of my complaints so far.
CHOICE #2 Discontinue one or both medications now.
Pros:
side effects should go away.
Risk of other cancers from the medication should go down (although I guess it could possibly be too late)
I feel better in general, do not lose a day each week and can concentrate on moving on with my life
Cons:
My risk for recurrence does not go down.
I would worry about whether I made the right decision.
Do you see my dilemma? I'm damned if I do, damned if I don't.
Here is what I've decided for the moment. Stay off Tamoxifen for the 2 weeks. I made the appointment for Herceptin for next week. Unless I have another totally crappy week, I;ll keep it. Then I will go back on Tamoxifen and possibly take a 2-3 week break from Herceptin and see how that goes.
Although at the moment I am strongly wanting to stop the Herceptin. I know if you've read any of my posts you're shaking your head and saying that you've heard it before. I know I am wishy-washy, and thank you very much for not rubbing it in. YOu can not possibly understand the scope of these decisions unless you have to face them for yourself. Yes, I am very glad that I have a type of cancer that has these treatments available. If I still had cancer it would be a non-issue and a no-brainer. It's the fact they are strictly preventive in my case that makes this so hard. The damage I am doing to my body in taking them can not be ignored. But neither can their success rates in preventing recurrence.
I really, really hate this.
Here are my choices, as I see them:
CHOICE #1. Continue taking the medications, as directed, for the length of time directed.
Pros:
Statistically my chances of recurrence go down.
I have only 12 weeks of Herceptin left.
Cons:
Depending on who you listen to, the statistics are not that great
They cause side effects of nausea, sore bones, headaches, which are getting worse as time goes by.
I lose a day each week for treatment on Tuesday
They could cause other kinds of cancer
Herceptin causes heart damage which may or may not be permanent
I'm not sure which of the meds is causing what. The nurse says she has heard complaints about both from people who are taking only one. So it could be both that are causing the bone pain, which is the worst of my complaints so far.
CHOICE #2 Discontinue one or both medications now.
Pros:
side effects should go away.
Risk of other cancers from the medication should go down (although I guess it could possibly be too late)
I feel better in general, do not lose a day each week and can concentrate on moving on with my life
Cons:
My risk for recurrence does not go down.
I would worry about whether I made the right decision.
Do you see my dilemma? I'm damned if I do, damned if I don't.
Here is what I've decided for the moment. Stay off Tamoxifen for the 2 weeks. I made the appointment for Herceptin for next week. Unless I have another totally crappy week, I;ll keep it. Then I will go back on Tamoxifen and possibly take a 2-3 week break from Herceptin and see how that goes.
Although at the moment I am strongly wanting to stop the Herceptin. I know if you've read any of my posts you're shaking your head and saying that you've heard it before. I know I am wishy-washy, and thank you very much for not rubbing it in. YOu can not possibly understand the scope of these decisions unless you have to face them for yourself. Yes, I am very glad that I have a type of cancer that has these treatments available. If I still had cancer it would be a non-issue and a no-brainer. It's the fact they are strictly preventive in my case that makes this so hard. The damage I am doing to my body in taking them can not be ignored. But neither can their success rates in preventing recurrence.
I really, really hate this.
Monday, July 2, 2012
Trying to Find a Pattern
I have been really busy lately. I directed a Day camp, then attended a 3 day camp with my boys. I felt pretty good during that time. I wasn't getting much sleep, because of being busy and stressing over details (but it was not a bad kind of stress). I'm sure I overdid it, but I loved it. At the second camp it was really hot and there was more walking than I could handle, so I drove myself around the camp to lessen my walking. I know I could not have handled an extra day.
When I got home, I got a stomach bug that had been going around at the Day Camp. I was down for a couple of days from that.
At some point during the second camp, I re-injured my already bad knee. Nothing major, just stepped in a hole or something. Ever since, it has been hurting, and I;ve been wearing a brace.
I got my Herceptin treatment on Wednesday after I got home. I had skipped the week before sue to the Day Camp.
Sometime during all this my bones started to hurt really bad. It has happened before and I'm sure I've written about it. It happens once in awhile and I have never tried to find any pattern to it before. Every bone in my body aches and I have trouble walking and getting up from sitting/lying down. I feel like an ancient old lady. Usually it doesn't last too long so it hasn't been too intolerable. I had looked around enough to find that it could be either the Herceptin or the Tamoxifen.
So now it's been going on long enough that I have been totally miserable for the past several days. I had my checkup last week and the Dr. said I could try going off Tamoxifen for 2 weeks and see if that helps. It isn't supposed to be a side effect of Tamoxifen, but someone forgot to tell all the women you read complaints from when you Google "Tamoxifen and bone pain". It IS listed as a possible side effect of Herceptin, though he said it would have happened sooner (again, lots of other women didn't get that memo).
I am going to try to record how I'm feeling every day so I can try to figure out what it's from. I am off Tamoxifen for 2 weeks and I will get my Herceptin tomorrow. I have 13 Herceptin treatments left and I had pretty much decided to see it through, however I can not live like this. I *THINK* it has happened right after treatment, and not lasted too long, and figured I could put up with that. Maybe it's been worse this week because I overdid it, or because I was sick, and I can deal with that. I just want to know.
When I got home, I got a stomach bug that had been going around at the Day Camp. I was down for a couple of days from that.
At some point during the second camp, I re-injured my already bad knee. Nothing major, just stepped in a hole or something. Ever since, it has been hurting, and I;ve been wearing a brace.
I got my Herceptin treatment on Wednesday after I got home. I had skipped the week before sue to the Day Camp.
Sometime during all this my bones started to hurt really bad. It has happened before and I'm sure I've written about it. It happens once in awhile and I have never tried to find any pattern to it before. Every bone in my body aches and I have trouble walking and getting up from sitting/lying down. I feel like an ancient old lady. Usually it doesn't last too long so it hasn't been too intolerable. I had looked around enough to find that it could be either the Herceptin or the Tamoxifen.
So now it's been going on long enough that I have been totally miserable for the past several days. I had my checkup last week and the Dr. said I could try going off Tamoxifen for 2 weeks and see if that helps. It isn't supposed to be a side effect of Tamoxifen, but someone forgot to tell all the women you read complaints from when you Google "Tamoxifen and bone pain". It IS listed as a possible side effect of Herceptin, though he said it would have happened sooner (again, lots of other women didn't get that memo).
I am going to try to record how I'm feeling every day so I can try to figure out what it's from. I am off Tamoxifen for 2 weeks and I will get my Herceptin tomorrow. I have 13 Herceptin treatments left and I had pretty much decided to see it through, however I can not live like this. I *THINK* it has happened right after treatment, and not lasted too long, and figured I could put up with that. Maybe it's been worse this week because I overdid it, or because I was sick, and I can deal with that. I just want to know.
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