I read this somewhere the other day and it was a very good point.
Someone on a cancer message board asked how come most of the posts, blogs etc were about problems and side effects. The answer was that people who are NOT having problems generally don't post about it, because they are off enjoying their lives! People post because they are having problems or just want to vent...believe it or not, when we vent to "normal" people in real life it is perceived as whining/complaining (or at least that's the way I often feel it is perceived. I try not to do it too much).
So when I am having issues and want to know if it's normal, I check with my good friend Google. I have not posted on any message boards, but my "health" bookmarks folder is full of threads on all the various subjects I post about here. Late at night, I go searching and often find other "cancer blogs" and I do find it helps to read the honest thoughts and experiences of others in the same boat. Who knows, maybe someone will find this blog someday and be encouraged, or at least validated, by something they read here?
I try not to complain too much to other people, my real-life friends and family. Not that I think they would mind hearing it. I'm not sure if I can explain this right, but I believe attitude has a lot to do with reality. I try to keep a positive attitude overall because when I do, I feel better. **it's hard for me to do that right now when I feel like crap! Damned if I do, damned if I don't. LOL!
Anyway, if you've read this far - in real life, I have talked to SO many people who either have had BC or are close to someone who has, and they share their stories. I don't think I've heard one overall negative story from RL people - it's all stories of 25 years post-cancer etc. Compare this to the overwhelmingly negative, or at least complaining of symptoms I have found online, and it seems to prove the point.
So if it seems you're reading too much negative and not enough positive, don't worry! The healthy people are not out there posting about it. I can't wait till *I* have nothing to post here about! :)
Tuesday, February 21, 2012
Sunday, February 19, 2012
Blah, blah.
So tonight I started feeling leery of Tamoxifen again. I'm supposed to start taking it in a little over a week. I had pretty much made my peace with it after talking to other real-life friends who were taking it, but now I am unsure, so I went on another search.
I haven't found anything new on that topic so far, but was reminded of the risk of uterine and/or endometrial cancer from taking the drug. It's not a huge risk, but it's there. Quotes from the cancer.org website:
Just like everything else about cancer treatments. EVERY.THING. I am so sick of "balancing risk". Every little thing they give me has risks but "oh, don't you want to 'do everything you can to stay alive'?" Well, I would actually prefer to have a good quality of life, for however long that may be (and I believe God already knows). I don't really want to ruin my heart, or cause cancer in other parts of my body. Thank you anyway.
Yes, let's do that, shall we? I did, and my own doctor told me that if it was his wife, he doesn't know what he would recommend to her, that his JOB is to recommend the "standard of care". Tamox is the "standard of care", so there we go.
Seriously, WTF? Just what the freaking F!!
Once I get the hysterectomy, I won't have to worry about the cancer risk, but I don't know when I'm getting that, for one thing. For another - well, let's just go back to WTF.
Then, in my search tonight I came across a blog where the writer had read not to use anti-oxidants during radiation. Here is an article about that. The writer said she asked her team and was told "we usually don't tell people that but yeah". What the %%$*## $^*#(#&^!!! How many times did I brag to the radiation team AND the chemo nurses that I had managed to stay well all during flu season due, in part, to my high doses of vitamin C? The dietician told me to stay away from most supplements but that vitamins were OK - I know I even asked about C to her - now I am pissed and even more confused than before.
Bottom line, it seems that cancer patients are just completely screwed no matter what they decide to do. And if we do what the doctors say, to the letter, we will hear "at least you did all you could!" while if we make other choices for ourselves we will hear how we think we are smarter than the doctors.
it sucks, and I am really sick of it.
I haven't found anything new on that topic so far, but was reminded of the risk of uterine and/or endometrial cancer from taking the drug. It's not a huge risk, but it's there. Quotes from the cancer.org website:
Women taking tamoxifen must balance this risk against the value of this drug in treating and preventing breast cancer.
Just like everything else about cancer treatments. EVERY.THING. I am so sick of "balancing risk". Every little thing they give me has risks but "oh, don't you want to 'do everything you can to stay alive'?" Well, I would actually prefer to have a good quality of life, for however long that may be (and I believe God already knows). I don't really want to ruin my heart, or cause cancer in other parts of my body. Thank you anyway.
This is an issue women may want to discuss with their doctors.
Yes, let's do that, shall we? I did, and my own doctor told me that if it was his wife, he doesn't know what he would recommend to her, that his JOB is to recommend the "standard of care". Tamox is the "standard of care", so there we go.
Tamoxifen acts as an anti-estrogen in breast tissue, but it acts like an estrogen in the uterus.
Seriously, WTF? Just what the freaking F!!
Once I get the hysterectomy, I won't have to worry about the cancer risk, but I don't know when I'm getting that, for one thing. For another - well, let's just go back to WTF.
Then, in my search tonight I came across a blog where the writer had read not to use anti-oxidants during radiation. Here is an article about that. The writer said she asked her team and was told "we usually don't tell people that but yeah". What the %%$*## $^*#(#&^!!! How many times did I brag to the radiation team AND the chemo nurses that I had managed to stay well all during flu season due, in part, to my high doses of vitamin C? The dietician told me to stay away from most supplements but that vitamins were OK - I know I even asked about C to her - now I am pissed and even more confused than before.
Bottom line, it seems that cancer patients are just completely screwed no matter what they decide to do. And if we do what the doctors say, to the letter, we will hear "at least you did all you could!" while if we make other choices for ourselves we will hear how we think we are smarter than the doctors.
it sucks, and I am really sick of it.
Tuesday, February 14, 2012
Ahhh
I had my last day of radiation today!
Exciting as that is, it's going to take some time until I am feeling better. The burns are pretty bad. Around the scar where they did the boosts just HURTS. it's is burned, too, but it also just HURTS deep down. I don't know if that's from burn or what. it almost feels like I was punched.
My side is actually better, although that would be earlier than they said. The skin is peeling but not so badly that it would get infected, at least not yet. The worst part is up under my neck, just above where the tumor was. The doctor says there are lymph nodes there so it got special attention. It blistered up a couple of weeks ago but they popped and it stings really bad. My clothes rub against it. Anything I put on it stings.
Pain pills really do make it all better....if only they lasted long enough to get me through the night. I think I've worked out a routine where I take the hydrocodone at 9:00 then some advil right before going to bed around midnight. That lasts long enough so that I don't wake up at 4 wanting to scream!
They said it would get worse before it gets better, but hopefully not!!
Anyway, one more step is over. I was going to make a decision on the herceptin at this point but I hadn't researched it anymore. I think as long as I'm not having any adverse side effects I'll just keep on truckin' for now.
I have to wait 4 - 6 months before having any surgery, so I have time to decide on that as well. I am cleared to go for my yearly check and get mammogram/ultrasound etc so I will probably go ahead and schedule that, but for now it looks like I am just in a little period of time when I can relax and get back to normal. I'm really looking forward to that!
Exciting as that is, it's going to take some time until I am feeling better. The burns are pretty bad. Around the scar where they did the boosts just HURTS. it's is burned, too, but it also just HURTS deep down. I don't know if that's from burn or what. it almost feels like I was punched.
My side is actually better, although that would be earlier than they said. The skin is peeling but not so badly that it would get infected, at least not yet. The worst part is up under my neck, just above where the tumor was. The doctor says there are lymph nodes there so it got special attention. It blistered up a couple of weeks ago but they popped and it stings really bad. My clothes rub against it. Anything I put on it stings.
Pain pills really do make it all better....if only they lasted long enough to get me through the night. I think I've worked out a routine where I take the hydrocodone at 9:00 then some advil right before going to bed around midnight. That lasts long enough so that I don't wake up at 4 wanting to scream!
They said it would get worse before it gets better, but hopefully not!!
Anyway, one more step is over. I was going to make a decision on the herceptin at this point but I hadn't researched it anymore. I think as long as I'm not having any adverse side effects I'll just keep on truckin' for now.
I have to wait 4 - 6 months before having any surgery, so I have time to decide on that as well. I am cleared to go for my yearly check and get mammogram/ultrasound etc so I will probably go ahead and schedule that, but for now it looks like I am just in a little period of time when I can relax and get back to normal. I'm really looking forward to that!
Sunday, February 12, 2012
Boosts
I've had 3 out of 5 "boosts" and I'm glad to have the weekend off. The boosts really are easier. They put the template on me and draw the "map" on my skin, lower the machine to where it's touching me and fire away for about 20 seconds. Then I'm done. No more struggling to stay still with restless legs or itchy nose!
Then again that area is getting redder, so I am treating it heavily in advance. I am peeved that they didn't point out the two areas that ended up being the WORST for me. They are not areas that I would have thought would be affected at all. When I pointed them out and asked why I was red there, they said it was the angle of the machine and it caught the heaviest from both directions. So if that is normal, wouldn't it have been helpful information to give out? I had only been treating what I thought was the "obvious" location, directly on my chest. In fact, when the spot under my neck turned up I thought it was an infected mosquito bite or something, while it turned out to be blisters. I was putting antibiotic cream on it, which I suppose didn't hurt but I could have done much more!
So for anyone reading this that might be doing radiation, my worst areas are a spot under my neck on the left side (the side they are aiming at) just above where the tumor was, like right over the spot where you hold your hand for the pledge of allegiance; and my left side, beginning from just under the arm and almost all the way down. I wish I had known this in advance so I could have been treating it. I had been rubbing my chest with coconut oil the entire time and it is barely pink, so I do think it really would have helped.
It looks a little better this weekend, but they told me it would get worse before it would get better so it may still get worse. They said it would be a couple of weeks before it improved.
I am taking pain pills at night (hydrocodone). I'm not sure if it's a good idea or not. The pain relief is initially blissful. But it only lasts 4 hours and I am sleeping at that point so I don't take another. Anyway I don't think I would want to since I have to get up and function at 6:30 am, and I feel a bit drugged as it is. I don't want to take them all day for the same reason. The nurses think I should, but I just have too much I need to do and it's hard enough to have a clear head as it is! So I try to stay caught up with advil all day. When I am caught up it's OK. I use the silvadene twice a day and coconut oil several times a day.
I do wake up in pain in the middle of the night. If I am clear enough to think about it I get up and take advil. Last night I did not and when I was putting the cream on this morning I was practically in tears.
I don't know that I would ever do radiation again without a very clear reason to do so. In my case, it's "just in case" and there is absolutely NO way of knowing if it's helping. Since can also cause troubles on its own it could be actually hurting more than helping and again there is no way of knowing. So I can't even say "I did all I could". What I can say is I made what seemed to be the best choice at the time, and I guess that will have to do.
Then again that area is getting redder, so I am treating it heavily in advance. I am peeved that they didn't point out the two areas that ended up being the WORST for me. They are not areas that I would have thought would be affected at all. When I pointed them out and asked why I was red there, they said it was the angle of the machine and it caught the heaviest from both directions. So if that is normal, wouldn't it have been helpful information to give out? I had only been treating what I thought was the "obvious" location, directly on my chest. In fact, when the spot under my neck turned up I thought it was an infected mosquito bite or something, while it turned out to be blisters. I was putting antibiotic cream on it, which I suppose didn't hurt but I could have done much more!
So for anyone reading this that might be doing radiation, my worst areas are a spot under my neck on the left side (the side they are aiming at) just above where the tumor was, like right over the spot where you hold your hand for the pledge of allegiance; and my left side, beginning from just under the arm and almost all the way down. I wish I had known this in advance so I could have been treating it. I had been rubbing my chest with coconut oil the entire time and it is barely pink, so I do think it really would have helped.
It looks a little better this weekend, but they told me it would get worse before it would get better so it may still get worse. They said it would be a couple of weeks before it improved.
I am taking pain pills at night (hydrocodone). I'm not sure if it's a good idea or not. The pain relief is initially blissful. But it only lasts 4 hours and I am sleeping at that point so I don't take another. Anyway I don't think I would want to since I have to get up and function at 6:30 am, and I feel a bit drugged as it is. I don't want to take them all day for the same reason. The nurses think I should, but I just have too much I need to do and it's hard enough to have a clear head as it is! So I try to stay caught up with advil all day. When I am caught up it's OK. I use the silvadene twice a day and coconut oil several times a day.
I do wake up in pain in the middle of the night. If I am clear enough to think about it I get up and take advil. Last night I did not and when I was putting the cream on this morning I was practically in tears.
I don't know that I would ever do radiation again without a very clear reason to do so. In my case, it's "just in case" and there is absolutely NO way of knowing if it's helping. Since can also cause troubles on its own it could be actually hurting more than helping and again there is no way of knowing. So I can't even say "I did all I could". What I can say is I made what seemed to be the best choice at the time, and I guess that will have to do.
Tuesday, February 7, 2012
Counting down
I miscounted somehow. I have to go to radiation until next Tuesday; I had thought Monday. BUT - I thought I had the big treatments till Thursday. Instead, I got a bit of good news today - it was the last one! So, no more burns to my side. I will have 5 "boosts" to my scar tissue and then I'm done.
They said it will be at least a week until my burn is better, and before it gets better, it will get worse. I can't imagine it being worse. The pain is so intense I can't even describe it. it's OK as long as I keep the advil coming, but it's really impossible to take it 'round the clock. For instance, after my infusion today I fell asleep and the Advil was due at 1:30. I slept through until 3:30 and woke up in excruciating pain. I took it at 4:00 and it still hasn't kicked in yet.
I can take hydrocodone if I want to, but honestly I don't want to. If I ever do, it will be at bedtime.
Today in the infusion room, Kim was doing her last chemo and asking the nurse some questions about radiation. (sidebar: I posted about Kim when it was her first day and she looked so scared. it's amazing how time flies and how the attitude changes! And how we all became friends. I wonder if any of us will see each other again.). She was wondering if she could go back to work while doing radiation. I was sitting far enough down that I was not part of the conversation, so I didn't say anything. Anyway it sounds like she will have an easier dose of only 3 weeks. I realize I am in the minority with my severe burn, but I still feel I was lied to. Nothing of this magnitude was even hinted to me. In fact, they specifically said any horror stories you hear are from the past and you don't have to worry about that, just a minor sunburn and some fatigue!
So let's discuss the fatigue. I am able to function and do what needs to be done. I do feel better if I am up DOING something, but it is a major effort to remain upright and force myself to do what I need to do. Today, being infusion day I allowed myself to succumb to my bed and while it felt great at the time, I feel like I have to recover even more now that I'm back up. Yet I feel like I could easily conk out at any given moment.
I may have mentioned this before but I don't remember. I am not going in the pool anymore at the moment because the chlorine will make my burn worse.
I have not made any further decision on herceptin. I have not even put any more thought into it. I'm not having any side effects, other than a little nausea for the few hours after infusion. I am confident knowing that I could stop at any time and believe I have had the majority of the benefit. After I get rid of this pain, I'll revisit the issue.
Same with getting a job. I thought I would want to start as soon as rads are done but I will need to wait till the pain is gone, if only so that I can wear a bra!
They said it will be at least a week until my burn is better, and before it gets better, it will get worse. I can't imagine it being worse. The pain is so intense I can't even describe it. it's OK as long as I keep the advil coming, but it's really impossible to take it 'round the clock. For instance, after my infusion today I fell asleep and the Advil was due at 1:30. I slept through until 3:30 and woke up in excruciating pain. I took it at 4:00 and it still hasn't kicked in yet.
I can take hydrocodone if I want to, but honestly I don't want to. If I ever do, it will be at bedtime.
Today in the infusion room, Kim was doing her last chemo and asking the nurse some questions about radiation. (sidebar: I posted about Kim when it was her first day and she looked so scared. it's amazing how time flies and how the attitude changes! And how we all became friends. I wonder if any of us will see each other again.). She was wondering if she could go back to work while doing radiation. I was sitting far enough down that I was not part of the conversation, so I didn't say anything. Anyway it sounds like she will have an easier dose of only 3 weeks. I realize I am in the minority with my severe burn, but I still feel I was lied to. Nothing of this magnitude was even hinted to me. In fact, they specifically said any horror stories you hear are from the past and you don't have to worry about that, just a minor sunburn and some fatigue!
So let's discuss the fatigue. I am able to function and do what needs to be done. I do feel better if I am up DOING something, but it is a major effort to remain upright and force myself to do what I need to do. Today, being infusion day I allowed myself to succumb to my bed and while it felt great at the time, I feel like I have to recover even more now that I'm back up. Yet I feel like I could easily conk out at any given moment.
I may have mentioned this before but I don't remember. I am not going in the pool anymore at the moment because the chlorine will make my burn worse.
I have not made any further decision on herceptin. I have not even put any more thought into it. I'm not having any side effects, other than a little nausea for the few hours after infusion. I am confident knowing that I could stop at any time and believe I have had the majority of the benefit. After I get rid of this pain, I'll revisit the issue.
Same with getting a job. I thought I would want to start as soon as rads are done but I will need to wait till the pain is gone, if only so that I can wear a bra!
Monday, February 6, 2012
The burn!
It burns. it burns. It really burns.
I haven't gotten any silvadene yet. I'm taking Advil, and that probably helps the most. As long as I stay on it and don't let it wear off. I am not using the soak as much as I am supposed to but it doesn't really seem to help. I read to double the amount of powder and lay down longer. Since I feel like going back to bed this morning anyway I'll try that (did I mention the tired??). I was surfing around on message boards for more info. Most say that silvadene doesn't really work that well. It sort of makes sense when you think that with most burns, the goal is ultimately healing. You don't expect to use the meds and then burn yourself again right away, which is what I'm essentially doing. Imagine John returning from the ER to hold another roman candle in his hands and it also explodes in his hand.
Anyway, I whine a lot, but it's not debilitating or anything. I'll live.
3 more full treatments, and 3 little ones. I found out those are called "boosts". Whatever - by this time next week I'll be headed for the last one!
I haven't gotten any silvadene yet. I'm taking Advil, and that probably helps the most. As long as I stay on it and don't let it wear off. I am not using the soak as much as I am supposed to but it doesn't really seem to help. I read to double the amount of powder and lay down longer. Since I feel like going back to bed this morning anyway I'll try that (did I mention the tired??). I was surfing around on message boards for more info. Most say that silvadene doesn't really work that well. It sort of makes sense when you think that with most burns, the goal is ultimately healing. You don't expect to use the meds and then burn yourself again right away, which is what I'm essentially doing. Imagine John returning from the ER to hold another roman candle in his hands and it also explodes in his hand.
Anyway, I whine a lot, but it's not debilitating or anything. I'll live.
3 more full treatments, and 3 little ones. I found out those are called "boosts". Whatever - by this time next week I'll be headed for the last one!
Wednesday, February 1, 2012
Red
10 more radiation to go. Or maybe 11; I've lost count. At any rate the last 3 (or is it 5?) are just along the scar, so there are fewer large treatments.
Apparently I am in the small percentage that gets the worse burns. It's red from my neck to bellybutton level. The worst is around the side and almost to my back. I don't know whether it's really worse from the radiation or from chafing, but I don't know that it makes any difference. What I do know is it hurts like hell, bringing me to tears more than once. I can no longer wear a bra, so I am sentenced to going out lopsided, which is the only thing besides my hair that I am self conscious about. In fact, it's WORSE than being bald. I feel like everyone is staring at me, like I'm a circus freak. Come one, come all! Take a look at the one-breasted wonder! See how silly she looks trying to cover herself up! (there's more, but I won't say it out loud).
It's also swollen so that I can't wear my compression sleeve. Did I post about that thing? Whatever.
They gave me some stuff to mix up and "soak" in. It involves wetting a washcloth and then lying down with that on me for 20 minutes. The washcloth, by the way, is freezing cold, even I mix it fresh with warm water. It's exactly like having the worst sunburn ever and getting doused with ice water.
They said if it got worse they can give me something more serious - Silvadene (sp?) - John got that when a Roman candle blew up in his hand. So yeah, that would be more serious.
I can get that tomorrow if I want to. For today, I am to try Advil, possibly a hydrocodone if I need it, and lay there with that washcloth stuff (Domeboro) as many times as I want to.
Once again, I feel like a whiny baby. I know I don't need to apologize, especially here, my place to really tell it like it is. I don't know why I still do. The fact is it's not fun and it's not pretty, and why do I feel the need to pretend that it is?
Apparently I am in the small percentage that gets the worse burns. It's red from my neck to bellybutton level. The worst is around the side and almost to my back. I don't know whether it's really worse from the radiation or from chafing, but I don't know that it makes any difference. What I do know is it hurts like hell, bringing me to tears more than once. I can no longer wear a bra, so I am sentenced to going out lopsided, which is the only thing besides my hair that I am self conscious about. In fact, it's WORSE than being bald. I feel like everyone is staring at me, like I'm a circus freak. Come one, come all! Take a look at the one-breasted wonder! See how silly she looks trying to cover herself up! (there's more, but I won't say it out loud).
It's also swollen so that I can't wear my compression sleeve. Did I post about that thing? Whatever.
They gave me some stuff to mix up and "soak" in. It involves wetting a washcloth and then lying down with that on me for 20 minutes. The washcloth, by the way, is freezing cold, even I mix it fresh with warm water. It's exactly like having the worst sunburn ever and getting doused with ice water.
They said if it got worse they can give me something more serious - Silvadene (sp?) - John got that when a Roman candle blew up in his hand. So yeah, that would be more serious.
I can get that tomorrow if I want to. For today, I am to try Advil, possibly a hydrocodone if I need it, and lay there with that washcloth stuff (Domeboro) as many times as I want to.
Once again, I feel like a whiny baby. I know I don't need to apologize, especially here, my place to really tell it like it is. I don't know why I still do. The fact is it's not fun and it's not pretty, and why do I feel the need to pretend that it is?
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