Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?
The facts aren't that happy. Sure, it's not the death sentence other forms of cancer are. Let's face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn't "if" but "when." I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don't know what the one year survival rate is, but it's not great. Another of my friends was told she'd live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.
But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?
For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years. The term is "the five year survival rate."
Pardon me for not being too chipper about that. I'm coming up on my second cancerversary.
If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer. Were you aware of that?
I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive. There's a pill for that." Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication. In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn't aware of that fact.
Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It's called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, "you just do herceptin treatments for the rest of your life." Well, that's probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn't work, either. And, the woman dies.
We are also all aware that breast cancer is curable. And that's true. To an extent. Most women don't die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we'd be fine. Cut it out, chop 'em off, radiate 'em. End of story. However, that's not how breast cancer works. There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.
Many of us are aware that there are things we can do to "prevent" breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not "preventative" as we'd like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer. It's not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best. Many women aren't aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever. She said she was counting on nursing to "protect" her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.
Let's talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s.
And none of this takes into account the negative effects of cancer treatment on a person's general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There's a double-edged sword. Better yet, there's the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, "sometimes fatal." Nothing like killing yourself to stay alive.
Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn't that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!
There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.
I don't think most people are aware of this. That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.
Yet, we are aware that there's a "cure" out there. In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure." However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research? prevention or parties? I'd like my money to go to research and prevention. Check out these charts to see where it really goes.
Just so you are aware.
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Sunday, May 15, 2011
Monday, October 25, 2010
Last Herceptin
Today, 15 months to the day of my official diagnosis (that is, the day my pathology came back), I will sit for my last herceptin infusion. Hopefully, my last ever. However, upon contemplation, if I could continue herceptin in an effort to prevent recurrence, I would. If I do have a recurrence, I'll have to have herceptin for the rest of my life, or as long as my heart can tolerate it. It is highly cardio-toxic.
In fact, my last echo-cardiogram indicated a 10% decrease in heart function; however, unlike MUGA scans (which involve the injection of radioactive dyes and freak me out) the "reading" of an echo-cardiogram varies from person to person, so a 10% decrease could be due to interpretation, which is exactly what my onco chalked the decrease up to. The ejection fraction was still within normal range, regardless, and I had run 5 miles the day before....so no one is worried about my heart.
But isn't that a mixed bag: if I have a recurrences, I'll have to have herceptin for the rest of my life, unless it causes enough heart damage that I'll have to stop it. Heart damage can kill...cancer can kill...sucks all the way around, I guess.
Rumor has it there is a herceptin vaccine in stage three trials right now. I'd be first in line, I think, if it were available for me.
Of course, there are "unknown long term effects" with which to be concerned. After all, I think herceptin itself has only been available like I've been using it since 2006 and only since 1998 for metastatic breast cancer...
Anyway, in a few minutes, I'll leave for my last infusion, hopefully forever.
Meanwhile, I'm just about to need to get my hair cut and styled. My wonderful sister-in-law did my first trim a few weeks ago, so that it is all the same length...about 1.5". It's much thicker than it was before. It's much, much curlier. I understand that I have what is known as a "chemo-perm". I'm trying to enjoy it, and I rather hope the curls stay. Some people find they do; others find they don't. Meanwhile, I've decided to keep my hair short. Now, I just need to find a local stylist who can make it do what I want it to do. Oh, and the appropriate "product" to make it conform to my every desire and have a texture that I approve of. Not too much to ask for. Probably impossible.
I've continued my quest for physical fitness. Some might call it an obsession. My one child certainly thinks it takes up too much of my time. Of course, being the whiniest child in the family, I take his complaints with a grain of salt. He'd never be happy. It has been a change for them though...me working days and then taking exercise classes and/or working out in the evenings. At one point, I might have cared more than I do now. Now, whatever. In fact, now, I regret the years I spent sublimating my needs to theirs, and more so, using that as an excuse to avoid dealing with my own issues. Yes, indeed, I think this is a common problem of many women, mothers especially, especially mothers in my "circle" of dedicated breastfeeders and homeschoolers. And now, looking in from the outside, I see many women who have put themselves in the position of being regularly taken advantage of by their families because of this. And I see many women who use their husbands, children, and "busyness" as an excuse for ignoring their physical (and perhaps mental) health. But all of this is material for another entry on another day.
Back to my own quest for fitness. I ran a little over 8 miles yesterday. I didn't do it quite nonstop. Yet, when I did stop, it was to stretch and deal with tight muscles, not to rest. I understand "runners" do this all the time. I'm not racing. I'm completing. I have one more "breast cancer" hurdle to accomplish this year, and that's my reconstruction surgery on November 19th. To psych myself up for that, my plan is to run the equivalent of a half marathon the weekend prior. I can't find a race nearby, and I'll be way too busy dealing with grading, planning for being out of the classroom, and generally getting ready for surgery to travel to a sanctioned event, so my plan is to simply run 13.1 miles on either that Saturday or Sunday on my own. I feel sure I can do it.
That is all well and good. In general, I feel good. I've learned to cope with the constant fatigue, which is still lingering from radiation. Some say it never goes away. My biggest challenge, the one I find most frustrating, the one that is most fear inducing, the worst perhaps permanent side effect of all of this, though, the one thing that I'm NOT doing well dealing with, is chemo-brain. I'll write more about this later, but suffice it to say, it is real, it's not going away or improving, and it has had a HUGE negative impact on my ability to live life and to function at my job. Fortunately, it now has a more professional sounding name and has been recognized by experts. Meanwhile, I am having a hard time coming to grips with, in essence, learning to accept that I'm basically brain damaged and not nearly as smart and capable as I was one year ago.
However, now I must jump in the van, drive to Toledo, and get my last infusion. I shall then celebrate by taking Tynan out to lunch and then, if the weather holds, we are going to go on a fun bike ride in one of the metroparks.
In fact, my last echo-cardiogram indicated a 10% decrease in heart function; however, unlike MUGA scans (which involve the injection of radioactive dyes and freak me out) the "reading" of an echo-cardiogram varies from person to person, so a 10% decrease could be due to interpretation, which is exactly what my onco chalked the decrease up to. The ejection fraction was still within normal range, regardless, and I had run 5 miles the day before....so no one is worried about my heart.
But isn't that a mixed bag: if I have a recurrences, I'll have to have herceptin for the rest of my life, unless it causes enough heart damage that I'll have to stop it. Heart damage can kill...cancer can kill...sucks all the way around, I guess.
Rumor has it there is a herceptin vaccine in stage three trials right now. I'd be first in line, I think, if it were available for me.
Of course, there are "unknown long term effects" with which to be concerned. After all, I think herceptin itself has only been available like I've been using it since 2006 and only since 1998 for metastatic breast cancer...
Anyway, in a few minutes, I'll leave for my last infusion, hopefully forever.
Meanwhile, I'm just about to need to get my hair cut and styled. My wonderful sister-in-law did my first trim a few weeks ago, so that it is all the same length...about 1.5". It's much thicker than it was before. It's much, much curlier. I understand that I have what is known as a "chemo-perm". I'm trying to enjoy it, and I rather hope the curls stay. Some people find they do; others find they don't. Meanwhile, I've decided to keep my hair short. Now, I just need to find a local stylist who can make it do what I want it to do. Oh, and the appropriate "product" to make it conform to my every desire and have a texture that I approve of. Not too much to ask for. Probably impossible.
I've continued my quest for physical fitness. Some might call it an obsession. My one child certainly thinks it takes up too much of my time. Of course, being the whiniest child in the family, I take his complaints with a grain of salt. He'd never be happy. It has been a change for them though...me working days and then taking exercise classes and/or working out in the evenings. At one point, I might have cared more than I do now. Now, whatever. In fact, now, I regret the years I spent sublimating my needs to theirs, and more so, using that as an excuse to avoid dealing with my own issues. Yes, indeed, I think this is a common problem of many women, mothers especially, especially mothers in my "circle" of dedicated breastfeeders and homeschoolers. And now, looking in from the outside, I see many women who have put themselves in the position of being regularly taken advantage of by their families because of this. And I see many women who use their husbands, children, and "busyness" as an excuse for ignoring their physical (and perhaps mental) health. But all of this is material for another entry on another day.
Back to my own quest for fitness. I ran a little over 8 miles yesterday. I didn't do it quite nonstop. Yet, when I did stop, it was to stretch and deal with tight muscles, not to rest. I understand "runners" do this all the time. I'm not racing. I'm completing. I have one more "breast cancer" hurdle to accomplish this year, and that's my reconstruction surgery on November 19th. To psych myself up for that, my plan is to run the equivalent of a half marathon the weekend prior. I can't find a race nearby, and I'll be way too busy dealing with grading, planning for being out of the classroom, and generally getting ready for surgery to travel to a sanctioned event, so my plan is to simply run 13.1 miles on either that Saturday or Sunday on my own. I feel sure I can do it.
That is all well and good. In general, I feel good. I've learned to cope with the constant fatigue, which is still lingering from radiation. Some say it never goes away. My biggest challenge, the one I find most frustrating, the one that is most fear inducing, the worst perhaps permanent side effect of all of this, though, the one thing that I'm NOT doing well dealing with, is chemo-brain. I'll write more about this later, but suffice it to say, it is real, it's not going away or improving, and it has had a HUGE negative impact on my ability to live life and to function at my job. Fortunately, it now has a more professional sounding name and has been recognized by experts. Meanwhile, I am having a hard time coming to grips with, in essence, learning to accept that I'm basically brain damaged and not nearly as smart and capable as I was one year ago.
However, now I must jump in the van, drive to Toledo, and get my last infusion. I shall then celebrate by taking Tynan out to lunch and then, if the weather holds, we are going to go on a fun bike ride in one of the metroparks.
Sunday, May 2, 2010
I really think that is a real light at the end of the tunnel...
Yes indeedy. I got some good news on Friday. As I was leaving radiation, one of the technicians commented that this coming Thursday was my last day. I was thinking it was Friday. So I made her double check. Yes, indeedy, I only have 4 days of radiation left! Thursday is my last radiation.
That is a huge milestone. Thursday will be the last active day of cancer treatment.
There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."
So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.
The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.
This simply is not an option. I will get my life back. I will feel better than I did before.
However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.
Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.
As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.
Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.
That is a huge milestone. Thursday will be the last active day of cancer treatment.
There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."
So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.
The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.
This simply is not an option. I will get my life back. I will feel better than I did before.
However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.
Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.
As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.
Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.
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