Wishing you all a happy Thanksgiving.
I joyfully spent the day cooking a big turkey dinner, eating pie, and talking and laughing with family and a friend. All in all my idea of the perfect Thanksgiving.
Last year at Thanksgiving, I had just finished chemo a few weeks before and was getting ready to start radiation therapy just after the holiday. I was bald and bewigged, but still surrounded by family and friends--one of the many things I was thankful for that year, too--but sick and tired of dealing with cancer and everything that entails.
This year, thankful for the clear scans I've had since then, the hair that has grown back and the cancer that hasn't, and absolutely thankful for being done with surgery, chemo, and rads, and, of course, still being alive.
I've definitely had some annoyances thanks to cancer, I won't lie, and sometimes they really tick me off. I have lymphedema and wear a sleeve and glove every day, I have pain in my back and hip that are apparently not cancer and may be unrelated to the treatments but the timing makes me wonder, and I have some "chemo fog" that worries me a lot.
But I also believe that with locally advanced and fast growing cancer, the discovery and treatment absolutely saved my life. I've read that the median survival time for untreated breast cancer (discovered by lumps not mammography, the date is, understandably, quite old since very, very few people choose not to treat cancer, fortunately, now that we have good treatments) is 2.7 years (if you're checking out the link, scroll down a bit for the 2.7 part). If I were right at the median I'd have one year left by now, assuming I didn't end up below average, which may be a more reasonable assumption given the fast-growing grade 3 nature of the cancer. I guess that will make next Thanksgiving my own celebration of the 2.7 mark, which will be very sweet, indeed. A little ghoulish, maybe, but it works for me.
I try to focus on the good, not the troubles, because it makes me happier to do that. And the very best of the good is that I'm alive. Alive to see my family, alive to cook and talk and laugh, alive to avoid "Black Friday" shopping, alive to eat too much pie and wonder if breakfast of sweet potatoes is a good idea. Just plain alive.
Wishing you all so lovely things to be thankful for this year, too (or at least enough lovely things to overshadow the ones that tick you off!).
Friday, November 29, 2013
Saturday, November 23, 2013
A normal life
Cancer takes a lot of time.
From diagnosis to the end of radiation was 9 months. Followed by follow-up visits with the breast surgeon, the medical oncologist, the radiation oncologist, the plastic surgeon. Also the nurse manager for the clinical trial I'm in. Then a few months off. Then the next round of follow-ups.
In between that there have been scans and visits to discuss the scans for the worrisome symptoms I've had.
And in between that, there was the lymphedema diagnosis and visits with a physical therapist to get it under control.
And, in between all that there is the usual family and work and life.
But today, I am just grateful. My daughter is hanging out with friends and then getting together for a for a club she's in and basically doing things that don't revolve around me and cancer. My husband and I are discussing Thanksgiving and what to do instead of smoking a turkey on the grill because the weather will be too cold to want to spend the time outdoors. The dishes need washing and I have laundry to fold. Library books to return. Shopping lists to make and groceries to buy. Life is gloriously normal.
It's exactly the kind of life I dreamed of when I was going through the cancer stuff. It was the goal that kept me going when I was sick of surgical drains, sick of chemo or sick of driving daily for radiation.
I'm not the kind of person who likes a lot of attention in real life. Cancer was hard in that way--I don't like to stick out or call attention to myself and having cancer makes that a lot harder to manage.
On the other hand, although I don't like to handle attention, I also don't like to have people minimize what the cancer was. I hate talking about it, but inside I somehow also don't want anyone to forget about it (well, formerly inside, now everyone on the internet can know how I feel!). So that gets weird sometimes.
I don't know for sure, but I suspect it's very normal. And if not, I'm still ok with it, right now, at least. If it gives me trouble later on, I may be less ok with it, but my guess is it's a reasonable part of moving forward.
I'm not likely to ever be the kind of person who says that "cancer made me a better person" or "I am so grateful for the cancer." For the record, I am not grateful for cancer. I hate cancer like a son of a bitch. Really. I do.
But, I do think it did change me in some ways, and I think part of my struggle with wanting the ordeal understood and not wanting to ever let on about the ordeal is recognizing that it has changed me in ways that aren't as obvious as my "pixie" haircut and lymphedema glove and sleeve.
I hope to get a little better at reconciling the two as time goes on and I think that the act of writing about it might help.
And for now, while I enjoyed order and normalcy before cancer, I find it even more satisfying these days. It's a relief to be back to it. Cancer took and continues to take time from me on an ongoing basis, irrespective of whatever time it may or may not shave off the end. But, while it changed some things, it didn't change everything.
When I was in the thick of treatments, a return to my regular life was one of the big things I held on to as my prize for getting through it all. Now that it's here, it is pretty darn good. Even the "new me" thinks so.
(And, not to worry, I'm not sure what's next for posting, but I'm pretty sure if nothing else, it will be less introspective than the last few posts, I promise!)
From diagnosis to the end of radiation was 9 months. Followed by follow-up visits with the breast surgeon, the medical oncologist, the radiation oncologist, the plastic surgeon. Also the nurse manager for the clinical trial I'm in. Then a few months off. Then the next round of follow-ups.
In between that there have been scans and visits to discuss the scans for the worrisome symptoms I've had.
And in between that, there was the lymphedema diagnosis and visits with a physical therapist to get it under control.
And, in between all that there is the usual family and work and life.
But today, I am just grateful. My daughter is hanging out with friends and then getting together for a for a club she's in and basically doing things that don't revolve around me and cancer. My husband and I are discussing Thanksgiving and what to do instead of smoking a turkey on the grill because the weather will be too cold to want to spend the time outdoors. The dishes need washing and I have laundry to fold. Library books to return. Shopping lists to make and groceries to buy. Life is gloriously normal.
It's exactly the kind of life I dreamed of when I was going through the cancer stuff. It was the goal that kept me going when I was sick of surgical drains, sick of chemo or sick of driving daily for radiation.
I'm not the kind of person who likes a lot of attention in real life. Cancer was hard in that way--I don't like to stick out or call attention to myself and having cancer makes that a lot harder to manage.
On the other hand, although I don't like to handle attention, I also don't like to have people minimize what the cancer was. I hate talking about it, but inside I somehow also don't want anyone to forget about it (well, formerly inside, now everyone on the internet can know how I feel!). So that gets weird sometimes.
I don't know for sure, but I suspect it's very normal. And if not, I'm still ok with it, right now, at least. If it gives me trouble later on, I may be less ok with it, but my guess is it's a reasonable part of moving forward.
I'm not likely to ever be the kind of person who says that "cancer made me a better person" or "I am so grateful for the cancer." For the record, I am not grateful for cancer. I hate cancer like a son of a bitch. Really. I do.
But, I do think it did change me in some ways, and I think part of my struggle with wanting the ordeal understood and not wanting to ever let on about the ordeal is recognizing that it has changed me in ways that aren't as obvious as my "pixie" haircut and lymphedema glove and sleeve.
I hope to get a little better at reconciling the two as time goes on and I think that the act of writing about it might help.
And for now, while I enjoyed order and normalcy before cancer, I find it even more satisfying these days. It's a relief to be back to it. Cancer took and continues to take time from me on an ongoing basis, irrespective of whatever time it may or may not shave off the end. But, while it changed some things, it didn't change everything.
When I was in the thick of treatments, a return to my regular life was one of the big things I held on to as my prize for getting through it all. Now that it's here, it is pretty darn good. Even the "new me" thinks so.
(And, not to worry, I'm not sure what's next for posting, but I'm pretty sure if nothing else, it will be less introspective than the last few posts, I promise!)
Friday, November 22, 2013
Choices
I've been writing a lot over the past couple of days. I'm writing, rewriting, editing, and writing again, and I'm still having trouble sorting out my thoughts here.
I read the other day about a woman who died of breast cancer. Or, I should say, another woman who died of breast cancer. Unlike most women, this particular person didn't use tested medical interventions after surgery. Her cancer was stage III and also HER2+, so it was fast moving and had already gone to the lymph nodes before her surgery. She chose to forgo chemo, Herceptin, radiation, hormone therapy in favor of "alternative therapies."
She was a total stranger who had been a regular poster on a cancer forum. It was in one of her threads back when I was first diagnosed that I first heard of people willingly choosing to do something besides standard treatment.
To be completely honest, when I read her post a year and a half ago I was astonished. I was only more astonished to read on and see that there were a number of people cheering her on. I had no idea there were people who believed chemo was more dangerous than cancer.
Later I discovered there is actually a big industry of alternative providers, herb supplement makers and sellers, naturopaths, and people with little or no health background telling people how to save their own lives, usually basing their advice solely on their own thoughts about their illness and nothing more. There's even some redneck kid who had surgery for his cancer but "knows" it was his healthy eating and multiple supplements that cured him. Not sure how to be just like him? No fear, he'll be happy coach you on his method for a low, low price of just $100 an hour or 2 hours for $175 (I wish I was making this up).
I speak of this in general terms, but to be clear, I have no idea who she turned to for treatment and advice or which of the 1000's of alternative options she tried.
A death brings out a lot of emotion and opinions, even in a internet forum. People discussing the role the treatment choices made. People who are making similar choices defend those choices, sometimes criticizing people who wonder because, supposedly, you're not allowed to wonder about choices if someone has passed away.
For the record, I disagree that talking about the choices when someone's died is inherently wrong or disrespectful. I've been thinking about this and why I feel that way. I think it's because, to me not talking about choices because of death seems like it tries to deny the humanity involved in that life. We all make good and bad choices because we're human. To deny that is to deny the truth about being human in this world. Although of course there is a time and a place.
I'm struggling with that time and place thing. I would never post these thoughts on the forum she frequented, nor would I engage her family and friends in a discussion about it. But ever since I read her post about her path I've been thinking about alternative cancer treatment and people who choose it, and I'm thinking a lot about her in particular and all the issues surrounding this. I think my own blog is a reasonable place to put down a little bit about what I'm thinking and feeling. I hope so.
As I go about my day, making supper, baking muffins, talking to my daughter about today's practice and what's left of her homework, I'm also thinking about the choices we each make every day. Some we know are momentous--getting married, having children, buying a house. Some are minor--beans or broccoli? the black sweater or the green blouse? Some are clearly and obviously disastrous--driving drunk, armed robbery, beating your children. And many more choices are in that uncharted area between good and bad, choices that may be far more momentous than you could ever know at the time. Or may not be. These are the choices that could put you in the path of a speeding car or cause you to walk down a street and meet your future husband. Or allow you to brush your hand against a lump in your breast you didn't realize you had.
I wonder which kind of choice her treatment decisions seemed like at the time. In her posts she was adamant and vocal about the wisdom of her choices, certain that she had done her research and understood more than the doubters, that she was on to something ahead of the curve. I assume those posts reflected her true feelings, but life is complicated and people are, too.
I hope she maintained that belief through to the end. Leaving this world early is tragic, and with regrets would be only more so. I am praying for her family and friends and wishing her joy in the hereafter. And, like this fallen sister, I'm fervently wishing and hoping for an end to cancer.
I feel like I've only barely begun to sort out my thoughts on this. I don't know if I'll post more on this later or not. But I'm certain it will be on my mind for a long time.
I read the other day about a woman who died of breast cancer. Or, I should say, another woman who died of breast cancer. Unlike most women, this particular person didn't use tested medical interventions after surgery. Her cancer was stage III and also HER2+, so it was fast moving and had already gone to the lymph nodes before her surgery. She chose to forgo chemo, Herceptin, radiation, hormone therapy in favor of "alternative therapies."
She was a total stranger who had been a regular poster on a cancer forum. It was in one of her threads back when I was first diagnosed that I first heard of people willingly choosing to do something besides standard treatment.
To be completely honest, when I read her post a year and a half ago I was astonished. I was only more astonished to read on and see that there were a number of people cheering her on. I had no idea there were people who believed chemo was more dangerous than cancer.
Later I discovered there is actually a big industry of alternative providers, herb supplement makers and sellers, naturopaths, and people with little or no health background telling people how to save their own lives, usually basing their advice solely on their own thoughts about their illness and nothing more. There's even some redneck kid who had surgery for his cancer but "knows" it was his healthy eating and multiple supplements that cured him. Not sure how to be just like him? No fear, he'll be happy coach you on his method for a low, low price of just $100 an hour or 2 hours for $175 (I wish I was making this up).
I speak of this in general terms, but to be clear, I have no idea who she turned to for treatment and advice or which of the 1000's of alternative options she tried.
A death brings out a lot of emotion and opinions, even in a internet forum. People discussing the role the treatment choices made. People who are making similar choices defend those choices, sometimes criticizing people who wonder because, supposedly, you're not allowed to wonder about choices if someone has passed away.
For the record, I disagree that talking about the choices when someone's died is inherently wrong or disrespectful. I've been thinking about this and why I feel that way. I think it's because, to me not talking about choices because of death seems like it tries to deny the humanity involved in that life. We all make good and bad choices because we're human. To deny that is to deny the truth about being human in this world. Although of course there is a time and a place.
I'm struggling with that time and place thing. I would never post these thoughts on the forum she frequented, nor would I engage her family and friends in a discussion about it. But ever since I read her post about her path I've been thinking about alternative cancer treatment and people who choose it, and I'm thinking a lot about her in particular and all the issues surrounding this. I think my own blog is a reasonable place to put down a little bit about what I'm thinking and feeling. I hope so.
As I go about my day, making supper, baking muffins, talking to my daughter about today's practice and what's left of her homework, I'm also thinking about the choices we each make every day. Some we know are momentous--getting married, having children, buying a house. Some are minor--beans or broccoli? the black sweater or the green blouse? Some are clearly and obviously disastrous--driving drunk, armed robbery, beating your children. And many more choices are in that uncharted area between good and bad, choices that may be far more momentous than you could ever know at the time. Or may not be. These are the choices that could put you in the path of a speeding car or cause you to walk down a street and meet your future husband. Or allow you to brush your hand against a lump in your breast you didn't realize you had.
I hope she maintained that belief through to the end. Leaving this world early is tragic, and with regrets would be only more so. I am praying for her family and friends and wishing her joy in the hereafter. And, like this fallen sister, I'm fervently wishing and hoping for an end to cancer.
I feel like I've only barely begun to sort out my thoughts on this. I don't know if I'll post more on this later or not. But I'm certain it will be on my mind for a long time.
Wednesday, November 20, 2013
How I danced with the red devil and shot mustard gas through my veins.
Sounds kind of poetic, doesn't it? Poetic and a little hardcore. I like that.
Like many, many stage III breast cancer patients, I was given a chemotherapy regime of dose dense Adriamycin and Cytoxan for 4 doses over 8 weeks, followed by Taxol for 4 doses over 8 more weeks.
Adriamycin is red and strong and, according to multiple sites on the internet, is sometimes called "The Red Devil"--not that anyone in the cancer center ever called it that in my hearing, of course, because that would be rude--but for each infusion of it I watched them hook the red bag to the IV in my port and watched the Kool Aid punch red liquid flow through the tubing and into my body. Later that day, the same red had made its way around my body and remained red as it made its way through my kidneys and out of my system.
Cytoxan, on the other hand, doesn't need a hardcore nickname. It isn't mustard gas exactly (a little poetic license on my part) but it's a nitrogen mustard akylating agent and a close cousin to the chemical warfare agent.
These, as I mentioned, are followed up by taxol, which for many people is the easier part of the ACT chemo with fewer harsh side effects. For me, it actually seemed a bit harder--taxol is when I finally lost the last of my lashes and brows and dealt with the worst bone pain and neuropathy, expressed as both numbness and as a relentless, prickly pain.
Dose dense means that the doses are given closely together (without being deadly, of course) and this feat is accomplished with the help of a variety of anti-nausea agents and another drug called Neulasta which requires a second visit 24 hours after the chemo infusion but is required to increase production of white blood cells killed off by the chemo. Not that the white blood cells ever got to normal-person numbers, but the Neulasta helps you get enough white blood cells together in your body to continue with the chemo. The goal of dose dense scheduling is to keep hitting the cancer cells hard and deny them time to recover between infusions. It's the chemo equivalent of a constant seige.
For me, the particular chemo I would have was discussed after my surgery, during a visit with my oncologist. Before surgery, my cancer team had thought, based on the MRI (and possibly some of the other scans I'd had--I'm not really sure anymore) that I would probably be stage II, with a decent chance of avoiding chemo altogeter. Immediately after surgery I knew they had found a lot of cancer in the lymph nodes, but I guess I didn't put 2 and 2 together because it wasn't until that appointment that I finally understood I was now stage IIIa. I am proud that at that appointment I held back my tears and I was able to keep it all together enough to talk about the most important thing at the moment: where we were going to go from there.
I had, of course, learned enough about the different stages before that appointment to know the general trends in odds and stages, but it wasn't until after I'd finished with chemo that I finally asked my oncologist about how that related to me. Weird, I know, but at the time I figured no matter what the odds were, for me it's just binary--either I'm alive or I'm dead and odds don't change that. Now I care more about the odds, and at times I cling to them like a cross, but when it was all new and I was just trying to get from one day to another, I didn't see any reason to bother asking. I knew stage III was not good news and when she said we really needed to hit the cancer very aggressively, and she recommended dose dense ACT chemo, even with it's side effects, I was all in.
As I understand it, until they develop something new, dose dense ACT chemo is the most aggressive chemo they give for breast cancer, equalled in aggression by some other 3rd generation regimens but, as the phrase goes, never surpassed. It's also extremely common for stage III her2- breast cancer, so I have a lot of sisters in this.
Side effects can include heart damage and permanent neuropathy, so it isn't given without a good reason, but lots of cancer that's already spread through the lymphatic system counts as a good reason.
I remain grateful to have had this kind of chemo in our bag of tricks to throw at this. My cancer was a nasty, aggressive kind, fast moving and mean, and I needed something heavy to throw at it, but it was hardly fun, because, well, because chemo.
But at the same time, now that it's over, in a lot of ways I enjoy being able to say I did that and made it through. It makes me feel like a badass punk kid who you better not mess with because I eat barbed wire for breakfast and spit nails for lunch. And, coming from a place where cancer seriously messed with my body and tried to take my life, I feel like I can probably give myself permission to indulge my inner "don't mess with me" from time to time.
I like to think my stage III sisters and I are a hardcore bunch, and, to me, that has a lot to do with having to learn to live with lots of fear and uncertainty, having to adjust to viewing victory as a moment on the road that may or may not be a lasting endpoint, having to understand about not enjoying the luxury of giving "quality of life" more weight than therapeutic benefit. Maybe that's not the case for all of us at stage III, and I won't even try to speak for other stages, but from my experience and experience on my favorite cancer forum, I think it's something a lot of us do struggle with and feel pushes us just a step or two outside the usual circle of breast cancer patients.
I'm really not trying to diminish the battle of other women who were lucky enough to have been an earlier stage. Heck, I thought I was one myself and it was still a fight. I understand that even stage I and II can metastasize and, despite better odds, it's still scary. Plus, I know I am very fortunate not to be working out stage IV issues right now.
The odd thing is, I've been rewriting this post a number of times trying desperately to say what I want to say without sounding like I'm not appreciating the struggles of other women at other stages and places. But at the same time, I wonder why I can't say just say, "we took on something that was damn hard and we fought our way through. Other people did other things, but we were here and we did this." We've been through a lot to have this chance at life. And right now I'm not in a mood to downplay that.
I've said before (and I meant it) that I'm not brave, just stubborn, but I'm also strong. I mean that, too, I know I'm strong. I danced with the red devil and shot mustard gas through my veins, and I'm still here to tell the tale. You don't want to mess with me.
Like many, many stage III breast cancer patients, I was given a chemotherapy regime of dose dense Adriamycin and Cytoxan for 4 doses over 8 weeks, followed by Taxol for 4 doses over 8 more weeks.
 |
| Marc Chagall's "The Dance" |
Cytoxan, on the other hand, doesn't need a hardcore nickname. It isn't mustard gas exactly (a little poetic license on my part) but it's a nitrogen mustard akylating agent and a close cousin to the chemical warfare agent.
These, as I mentioned, are followed up by taxol, which for many people is the easier part of the ACT chemo with fewer harsh side effects. For me, it actually seemed a bit harder--taxol is when I finally lost the last of my lashes and brows and dealt with the worst bone pain and neuropathy, expressed as both numbness and as a relentless, prickly pain.
Dose dense means that the doses are given closely together (without being deadly, of course) and this feat is accomplished with the help of a variety of anti-nausea agents and another drug called Neulasta which requires a second visit 24 hours after the chemo infusion but is required to increase production of white blood cells killed off by the chemo. Not that the white blood cells ever got to normal-person numbers, but the Neulasta helps you get enough white blood cells together in your body to continue with the chemo. The goal of dose dense scheduling is to keep hitting the cancer cells hard and deny them time to recover between infusions. It's the chemo equivalent of a constant seige.
For me, the particular chemo I would have was discussed after my surgery, during a visit with my oncologist. Before surgery, my cancer team had thought, based on the MRI (and possibly some of the other scans I'd had--I'm not really sure anymore) that I would probably be stage II, with a decent chance of avoiding chemo altogeter. Immediately after surgery I knew they had found a lot of cancer in the lymph nodes, but I guess I didn't put 2 and 2 together because it wasn't until that appointment that I finally understood I was now stage IIIa. I am proud that at that appointment I held back my tears and I was able to keep it all together enough to talk about the most important thing at the moment: where we were going to go from there.
I had, of course, learned enough about the different stages before that appointment to know the general trends in odds and stages, but it wasn't until after I'd finished with chemo that I finally asked my oncologist about how that related to me. Weird, I know, but at the time I figured no matter what the odds were, for me it's just binary--either I'm alive or I'm dead and odds don't change that. Now I care more about the odds, and at times I cling to them like a cross, but when it was all new and I was just trying to get from one day to another, I didn't see any reason to bother asking. I knew stage III was not good news and when she said we really needed to hit the cancer very aggressively, and she recommended dose dense ACT chemo, even with it's side effects, I was all in.
As I understand it, until they develop something new, dose dense ACT chemo is the most aggressive chemo they give for breast cancer, equalled in aggression by some other 3rd generation regimens but, as the phrase goes, never surpassed. It's also extremely common for stage III her2- breast cancer, so I have a lot of sisters in this.
Side effects can include heart damage and permanent neuropathy, so it isn't given without a good reason, but lots of cancer that's already spread through the lymphatic system counts as a good reason.
I remain grateful to have had this kind of chemo in our bag of tricks to throw at this. My cancer was a nasty, aggressive kind, fast moving and mean, and I needed something heavy to throw at it, but it was hardly fun, because, well, because chemo.
But at the same time, now that it's over, in a lot of ways I enjoy being able to say I did that and made it through. It makes me feel like a badass punk kid who you better not mess with because I eat barbed wire for breakfast and spit nails for lunch. And, coming from a place where cancer seriously messed with my body and tried to take my life, I feel like I can probably give myself permission to indulge my inner "don't mess with me" from time to time.
I like to think my stage III sisters and I are a hardcore bunch, and, to me, that has a lot to do with having to learn to live with lots of fear and uncertainty, having to adjust to viewing victory as a moment on the road that may or may not be a lasting endpoint, having to understand about not enjoying the luxury of giving "quality of life" more weight than therapeutic benefit. Maybe that's not the case for all of us at stage III, and I won't even try to speak for other stages, but from my experience and experience on my favorite cancer forum, I think it's something a lot of us do struggle with and feel pushes us just a step or two outside the usual circle of breast cancer patients.
I'm really not trying to diminish the battle of other women who were lucky enough to have been an earlier stage. Heck, I thought I was one myself and it was still a fight. I understand that even stage I and II can metastasize and, despite better odds, it's still scary. Plus, I know I am very fortunate not to be working out stage IV issues right now.
The odd thing is, I've been rewriting this post a number of times trying desperately to say what I want to say without sounding like I'm not appreciating the struggles of other women at other stages and places. But at the same time, I wonder why I can't say just say, "we took on something that was damn hard and we fought our way through. Other people did other things, but we were here and we did this." We've been through a lot to have this chance at life. And right now I'm not in a mood to downplay that.
I've said before (and I meant it) that I'm not brave, just stubborn, but I'm also strong. I mean that, too, I know I'm strong. I danced with the red devil and shot mustard gas through my veins, and I'm still here to tell the tale. You don't want to mess with me.
Monday, November 18, 2013
Why write?
My husband told me yesterday that my blog actually surprised him a bit. I talk about cancer (some) and we're both very aware (of course) of what happened and what could have happened and what could still happen, but I tend to think about these things a lot when I'm driving or when the house is quiet, so it turns out he was unaware of how much and how deeply I still think about some of the issues surrounding my cancer.
I've heard people say that the aftermath of cancer for survivors is, or can be, like PTSD. For me and my experience, that's a little too over the top--based on my experience alone, it feels disrespectful of soldiers and people who have been through disasters and struggle with PTSD, but I can't claim to speak for every woman or understand every survivor's experience, and I'm willing to believe it could be that way for some people. But, even though I have reservations about PTSD here, I think there is a kernel of truth in that even when the cancer is dealt with, the experience does tend to stay in your head, and that can be difficult.
Part of what I'm trying to do with my blogging is work through some of the issues, put down what's swimming around in my head and force myself to not just think about it but think it through--putting it down "on paper" helps me gather up the snarled thoughts and ideas and give them some order, work them out and then really look at them in a way that's clearer in print than it was when they were free to zing about pell-mell inside my head.
Another thing I'm hoping to do is put some of this to rest and clear some space in my head for other things. I like to write and not that long ago I was going great guns writing stories that had nothing at all to do with cancer. But since the last two metastasis scares, it's felt all but impossible to just sit down and work on writing anything vaguely creative. Heck, right now it's even hard to get myself to sit down and read a book, and I like to read. The worst thing is that I've been working on a story that my daughter is particularly interested in and each time I'm afraid the cancer is back, one of the sad things that goes through my mind is, "Will I even have the time to finish that story or will I leave my baby girl motherless and never knowing how it ends?" (Yes, my internal voice is that much over the top). And yet, even though the crisis has again passed, I'm still having the worst time settling down to focus on writing. I haven't put a single word to a single piece of fiction in months. And that upsets me. I'm hoping that by putting some of these cancer thoughts down here, my mind will be able to escape cancer thoughts a little bit more and make some room for other things.
Another reason I'm writing this is that in real life, I hate to upset people and arguing my points tends to upset me. But this little piece of blog is my own so I feel a bit freer to say things that could possibly inspire battle lines to be drawn. Also, sometimes I read things about cancer that I would really like to preach on, but I know my going off full tilt Don Quixote-style (a.k.a. you're going down, windmills) to make my point isn't actually going to do much but upset me and (usually) convince the other person to write me off. But this is my blog and my space and it's a place I can send my ranting out into the universe. If my posts come across as preachy, my apologies, it's just that some of what I write comes from things I preach about in my own head--gosh, that doesn't sound whacked out at all, does it?
My final reason for blogging is that I think sharing my story may be useful or even interesting for other women in these shoes. When I found out I had cancer, one of the things that helped me get through it was reading some blogs from others who'd been there, done that. Even when I disagree with some of what a blogger writes, I find it interesting to see how other people think and clarify why I feel the way I do (or at least it's that way after I get over my inner, "How can you think that way?"--see preaching, above). I'm not a much of a joiner and, especially when cancer was hogging so much of my time, I most times prefer a nice evening at home with my family than attending meetings or groups. I never went to a "Look Good Feel Better" session and I've never attended a support group, but reading forums and blogs gave me a connection that I needed, but in a way that fit myself and my life.
I read an article a few months ago in Johns Hopkins Breast Cancer Journal from September, called Chronicling Cancer Experience Online Can Reduce Depressive Symptoms in Breast Cancer Patients and it's interesting to me because they talk about blogging and connecting electronically and how women with breast cancer who did that had lower rates of depression. Not sure I would have guessed that, exactly, but I think it makes sense and in some ways, when you get down to it, that's part of why I've started doing this.
I'm finding blogging a good thing and I have so many topics I want to write on, so right now I'm really dedicated to it. However, I feel like I should issue fair warning that I do have a long and storied history of starting projects guns blazing and then running out of steam. I don't feel like that right now, but I know it may come to that at some point--I hope not, but that's something I see in myself from time to time. Or, I may come to a time when I've said all I need to say and I just want to move a few steps away from the cancer again. In some ways I hope that does happen eventually, moving on would be a positive sign. But if this blog can do the work I need it to before than, I'll still consider it time well spent, and I hope you will, too.
Thank you for being my reader and joining my on this journey.
I've heard people say that the aftermath of cancer for survivors is, or can be, like PTSD. For me and my experience, that's a little too over the top--based on my experience alone, it feels disrespectful of soldiers and people who have been through disasters and struggle with PTSD, but I can't claim to speak for every woman or understand every survivor's experience, and I'm willing to believe it could be that way for some people. But, even though I have reservations about PTSD here, I think there is a kernel of truth in that even when the cancer is dealt with, the experience does tend to stay in your head, and that can be difficult.
Part of what I'm trying to do with my blogging is work through some of the issues, put down what's swimming around in my head and force myself to not just think about it but think it through--putting it down "on paper" helps me gather up the snarled thoughts and ideas and give them some order, work them out and then really look at them in a way that's clearer in print than it was when they were free to zing about pell-mell inside my head.
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| Picasso's version of Don Quixote |
My final reason for blogging is that I think sharing my story may be useful or even interesting for other women in these shoes. When I found out I had cancer, one of the things that helped me get through it was reading some blogs from others who'd been there, done that. Even when I disagree with some of what a blogger writes, I find it interesting to see how other people think and clarify why I feel the way I do (or at least it's that way after I get over my inner, "How can you think that way?"--see preaching, above). I'm not a much of a joiner and, especially when cancer was hogging so much of my time, I most times prefer a nice evening at home with my family than attending meetings or groups. I never went to a "Look Good Feel Better" session and I've never attended a support group, but reading forums and blogs gave me a connection that I needed, but in a way that fit myself and my life.
I read an article a few months ago in Johns Hopkins Breast Cancer Journal from September, called Chronicling Cancer Experience Online Can Reduce Depressive Symptoms in Breast Cancer Patients and it's interesting to me because they talk about blogging and connecting electronically and how women with breast cancer who did that had lower rates of depression. Not sure I would have guessed that, exactly, but I think it makes sense and in some ways, when you get down to it, that's part of why I've started doing this.
I'm finding blogging a good thing and I have so many topics I want to write on, so right now I'm really dedicated to it. However, I feel like I should issue fair warning that I do have a long and storied history of starting projects guns blazing and then running out of steam. I don't feel like that right now, but I know it may come to that at some point--I hope not, but that's something I see in myself from time to time. Or, I may come to a time when I've said all I need to say and I just want to move a few steps away from the cancer again. In some ways I hope that does happen eventually, moving on would be a positive sign. But if this blog can do the work I need it to before than, I'll still consider it time well spent, and I hope you will, too.
Thank you for being my reader and joining my on this journey.
Saturday, November 16, 2013
Standing on the Shoulders of Giants: me (plus clinical trials)
I laugh with my kids about how the internet revolutionized our lives. When I was younger, we used to argue about facts on and off for years. My kids argue briefly and let Google figure it out. Doesn't really cut down on the arguing, but at least they put an issue to rest and move on to another fairly quickly these days.
I don't remember much from 8th grade science class. To be honest, I don't even remember what branch of science it was focused on and, while I can see his face, I don't remember my teacher's name. What I do remember is a single quote our teacher attributed to a modern scientist accepting some big science prize--possibly a Nobel, but I don't remember for sure. While accepting the prize, the scientist said, "I am merely standing on the shoulders of giants."
So much the we have is built on the work of those who came before us. Cancer fighting techniques and my odds of staying alive are no exception.
There's a blogger who writes about science and medicine who's written the clearest explanation I've seen about the process of developing the knowledge that is our current treatment for breast cancer here. The knowledge gained is impressive, but as impressive, to me at least, is the number of women over decades of time who were willing to be part of these trials and help provide better treatment for those of us who would follow. I am profoundly grateful to them.
It isn't an understatement to say I likely owe them my life. For my cancer, they estimate the chemo regime I had offers me a 32% increase in survival odds (32 out of 100 more women will be alive because they had the chemo regime).
Good trials require a lot of things, but one of the biggest requirements is a large enough number of participants to see what's due to the treatment difference.
I think about it this way: I'm having pain in my hip. It could be I injured it exercising. It could be the tamoxifen. It could be a genetic predisposition to hip weakness. It could be wear and tear from my years as a cross country and distance track runner. It could also be bad shoes.
So, at my doctor's suggestion, I've been resting it and taking Advil. It's a bit better now. I'm assuming it's the rest and Advil that are helping, but I have no way of knowing if it could really be better because I haven't been wearing athletic shoes or because the leaf mold has put me back on my allergy pills and they help or because I'm eating food with more or less of a certain vitamin or mineral over the last 2 weeks, or something else entirely that I'm not even thinking of.
I'm one person with all kinds of things I do every day, so who the heck knows which it was?
But, if someone who knows a lot more than I do about joints and allergy pills sees a way allergy pills might, say lubricate joints... Or if someone looks at records for people who take these pills and notices there seems to be a trend of less hip pain... That's a great time to set up a trial and see.
With enough people involved, the different little things we each do (wear sneakers, eat a lot of berries, stretch after exercise or don't) have a much smaller impact on the whole and by looking at lots of people with hip pain and giving them either the allergy pill or a sugar pill, we can get a much clearer picture of whether the allergy pill makes any difference or not.
As a cancer patient, I probably hear more than my share of stories about people who did x, y, or z and are now cancer free (in my life, these come from a place of love and a desire to help me, so I'm thankful for that). As a cancer patient, I also have been through times where I have been very sad and very frightened and want to do something to make it better, so there have been times when I've been pretty "ripe for the picking" about ideas that might help me.
But the thing is, while you may have heard of someone who had cancer and drank 10 cups of organic juice every day and are cancer free to this day, that's not really proof that the juice helped.
Maybe it did, but maybe all the cancer was removed by surgery or the first doses of chemo the person did prior to giving it up and juicing. Maybe it was something else the person did but isn't thinking to mention, like hit menopause, lost weight, or stopped using goodness knows what. Maybe that person is one of the lucky few who were on the right side of the odds--even a cancer that will kill 95% within 5 years still has 5% who don't die, and someone has to be in that 5%, right?
Goodness knows cancer sucks and I, as much as anyone, want to believe in things that will help. But so-and-so who did something and is better doesn't tell me anything, really.
Maybe it doesn't hurt to add whatever so and so did into the mix if it's harmless, but if its something with the potential to do harm, either by itself or because of what you give up to do it, well, I don't want my life to be hanging in the balance.
So that's where the clinical trials come in. When enough men and women sign up and people track carefully, then we know. And, for me, that's how we know my dose dense ACT chemo regime works better than AC alone which works better than the earlier chemo regimes which works better than no chemo.
Maybe I'd be one of the lucky few who would have lived anyway, but the stakes are high and the odds aren't good.
And so I truly believe I stand here today by the grace of God, medical people, and thousands of men and women who cared and paid it forward.
(and yes, I am in a trial myself--to my kids and their generation: hope it helps!)
I don't remember much from 8th grade science class. To be honest, I don't even remember what branch of science it was focused on and, while I can see his face, I don't remember my teacher's name. What I do remember is a single quote our teacher attributed to a modern scientist accepting some big science prize--possibly a Nobel, but I don't remember for sure. While accepting the prize, the scientist said, "I am merely standing on the shoulders of giants."
I've tried to find out who it was, but Google gives me lots about ancient legends and Sir Isaac Newton and nothing (or nothing I have the patience to wade through right now) about modern scientific prize winners. Perhaps I'm remembering wrong, perhaps it never really happened (that was another hazard of the time before internet, urban legends had much longer legs), but I still love that quote.
So much the we have is built on the work of those who came before us. Cancer fighting techniques and my odds of staying alive are no exception.
There's a blogger who writes about science and medicine who's written the clearest explanation I've seen about the process of developing the knowledge that is our current treatment for breast cancer here. The knowledge gained is impressive, but as impressive, to me at least, is the number of women over decades of time who were willing to be part of these trials and help provide better treatment for those of us who would follow. I am profoundly grateful to them.
It isn't an understatement to say I likely owe them my life. For my cancer, they estimate the chemo regime I had offers me a 32% increase in survival odds (32 out of 100 more women will be alive because they had the chemo regime).
Good trials require a lot of things, but one of the biggest requirements is a large enough number of participants to see what's due to the treatment difference.
I think about it this way: I'm having pain in my hip. It could be I injured it exercising. It could be the tamoxifen. It could be a genetic predisposition to hip weakness. It could be wear and tear from my years as a cross country and distance track runner. It could also be bad shoes.
So, at my doctor's suggestion, I've been resting it and taking Advil. It's a bit better now. I'm assuming it's the rest and Advil that are helping, but I have no way of knowing if it could really be better because I haven't been wearing athletic shoes or because the leaf mold has put me back on my allergy pills and they help or because I'm eating food with more or less of a certain vitamin or mineral over the last 2 weeks, or something else entirely that I'm not even thinking of.
I'm one person with all kinds of things I do every day, so who the heck knows which it was?
But, if someone who knows a lot more than I do about joints and allergy pills sees a way allergy pills might, say lubricate joints... Or if someone looks at records for people who take these pills and notices there seems to be a trend of less hip pain... That's a great time to set up a trial and see.
With enough people involved, the different little things we each do (wear sneakers, eat a lot of berries, stretch after exercise or don't) have a much smaller impact on the whole and by looking at lots of people with hip pain and giving them either the allergy pill or a sugar pill, we can get a much clearer picture of whether the allergy pill makes any difference or not.
As a cancer patient, I probably hear more than my share of stories about people who did x, y, or z and are now cancer free (in my life, these come from a place of love and a desire to help me, so I'm thankful for that). As a cancer patient, I also have been through times where I have been very sad and very frightened and want to do something to make it better, so there have been times when I've been pretty "ripe for the picking" about ideas that might help me.
But the thing is, while you may have heard of someone who had cancer and drank 10 cups of organic juice every day and are cancer free to this day, that's not really proof that the juice helped.
Maybe it did, but maybe all the cancer was removed by surgery or the first doses of chemo the person did prior to giving it up and juicing. Maybe it was something else the person did but isn't thinking to mention, like hit menopause, lost weight, or stopped using goodness knows what. Maybe that person is one of the lucky few who were on the right side of the odds--even a cancer that will kill 95% within 5 years still has 5% who don't die, and someone has to be in that 5%, right?
Goodness knows cancer sucks and I, as much as anyone, want to believe in things that will help. But so-and-so who did something and is better doesn't tell me anything, really.
Maybe it doesn't hurt to add whatever so and so did into the mix if it's harmless, but if its something with the potential to do harm, either by itself or because of what you give up to do it, well, I don't want my life to be hanging in the balance.
So that's where the clinical trials come in. When enough men and women sign up and people track carefully, then we know. And, for me, that's how we know my dose dense ACT chemo regime works better than AC alone which works better than the earlier chemo regimes which works better than no chemo.
Maybe I'd be one of the lucky few who would have lived anyway, but the stakes are high and the odds aren't good.
And so I truly believe I stand here today by the grace of God, medical people, and thousands of men and women who cared and paid it forward.
(and yes, I am in a trial myself--to my kids and their generation: hope it helps!)
Thursday, November 14, 2013
I am not the brave person you're looking for
I have strange mixed feelings about the Pink Glove Dance contest. Most of the videos get me all choked up (ok, I'm a sucker for high school bands, children, sports teams, happy crowds, and I cry at movies, songs, books, commercials, St Jude mailings, graduations, people talking about graduations....you get the picture), but at the same time I see the videos and I can't for the life of me figure out what the goal is with respect to ending cancer.
I may post more about that at some point, but the thing that brought it to mind today is number of videos that chose (from the set choices) Sara Barellies' "Brave" as their music. Bravery in the face of cancer is so common it's moved well into the area of total cliché.
For me, the thing is, I'm just not that brave.
If I had the choice, I would not have chosen this fight. Not unless there was some super life and death reason hanging over my head. And even then I would most likely fight like hell if there was a way to get out of it (Trust me. I tried. There wasn't).
I went through surgery because it was a life or death choice. Same with chemo. Same with radiation therapy. Same with tamoxifen.
I just didn't really have any better choices.
And if I seemed stoic, it was mostly because I didn't want to frighten my family. And if I seemed positive, it was mostly because I hate to be the most depressing person in the room.
Sometimes, I guess, "resigned to my treatment" and "brave" can look a lot alike. Apparently "compliant" can, too.
I got a lot of comforting words about how brave I was, and while I dearly appreciate the love and kind wishes (really, they were incredibly helpful during a difficult time), the "brave" makes me feel like an impostor. Now that I'm through with it, people tell me how proud they are and how amazing I am to have made it through this--do I love the image of myself as this totally awesome butt kicker? Well, of course I do! But my doctors, nurses, and technologists are amazing. I pretty much just did what I was told.
Lately, I've been wondering if all this full-on "brave" doesn't make it harder for people in the hard parts of this cancer journey than it should be (it's inherently pretty hard as it is, after all). There are, unfortunately, always new faces on the cancer forum I like to read, and the common theme is fear. Fear of dying, fear of suffering, fear of losing the parts of life they care about. "I'm devastated." "I don't know if I can do this." "I'm really worried." "I'm so scared." And, like most survivors, I know too well what they mean.
The brave stuff is kind of like that video of the doctor dancing before her double mastectomy that was all over the news a week or so ago. For the woman herself, hey, if that's what she wanted I'm glad she got it. But from an all-over-the-news-and-internet standpoint, it sets a pretty lousy precedent.
Most women who find out they have cancer are frightened, not instantly transformed into an army of pink-clad Boudicas jumping up ready to slay this cancer beast. Most women about to undergo a mastectomy don't feel like dancing, and don't want to dance (ask me how I know). Not that you can't be that if you want to (although, frankly, pink-clad Boudicas may not translate so well into real life), but, goodness knows, no one should expect that of you and you absolutely don't need to expect that of yourself. Most women going through testing, surgery, chemo and radiation are just trying to keep going until it's over. And, know what? Feeling frightened, anxious, and like you're just barely hanging by a thread and barely getting through is perfectly alright. And I think the vast majority of "brave" survivors you see felt exactly the same way.
There was one Pink Glove Dance video that kind of spoke to me. In between the usual waving gloves and happy sashed dancers, there were messages from women who survived and acknowledgement that not everyone does survive (something that's missing in a lot of the super-survivor pink parties). And the messages were individual responses to "Brave is..." The one I liked? "Brave is Surviving." Maybe if we're going to call people like me brave, it's a good idea to define the terms. And to me, "Brave is Surviving" is a good addition to the definition. Not the only thing that counts as brave, but a good thing to have be part of it.
If you have cancer, you don't have to embrace the cancer experience or be empowered by it, and I like to think that brave could also include just getting through one day at a time because you don't really have a better choice. Because most days, that's really what it's like, but one day at a time will get you through a lot of tough days.
I'm still not sure I can identify with "brave" but "surviving" works for me.
Plus, the other thing that video had was high school teams and children laughing--and who doesn't like that?
If you have cancer, you don't have to embrace the cancer experience or be empowered by it, and I like to think that brave could also include just getting through one day at a time because you don't really have a better choice. Because most days, that's really what it's like, but one day at a time will get you through a lot of tough days.
I'm still not sure I can identify with "brave" but "surviving" works for me.
Plus, the other thing that video had was high school teams and children laughing--and who doesn't like that?
Tamoxifen, my new best friend
Ah, tamoxifen. Nothing quite like it to divide groups of cancer survivors.
Go on, just look at any forum for breast cancer survivors. Find a couple of survivors and ask them what they think about it. Join me at my cancer rehab exercise group, very first day a long-term survivor there brought up how she refused to take it all those years ago and, hey, still alive thank you very much.
As for me, I love the stuff.
For those of you who aren't going through it, tamoxifen is probably something you've never heard of. But if you've had breast cancer or are close to someone who has, it's going to come up.
Tamoxifen blocks estrogen receptors on cancer cells--in some other parts of the body it acts like estrogen and in some it also blocks. Many breast cancers are what's called "hormone positive" which means they feed, in part, on estrogen (and progesterone, too, but it's related). And, thanks to tamoxifen, if you have this ER+ kind of cancer, it's considered a good thing compared to ER- because drugs like tamoxifen can help keep it at bay.
Tamoxifen has been around a long time, it's been generic for over a decade and was, of course, patented before that. There are other options for women who have gone through menopause (either natural or long enough from chemo to know it's permanent) and don't have bone loss or certain other conditions, but for many women, women like me, tamoxifen is the only real game in town.
And, unlike chemo and radiation, you keep your hair, don't lose your white blood cells, don't get nausea or neuropathy or any of the other not so fun side effects, and it's just a pill to swallow and you're done.
So, you may be asking, if tamoxifen is so wondrously fabulous, what's not to love?
Well, it's not without side effects, and there's lots of discussion about them, and, frankly, lots of fear.
The biggest side effect for many people, myself included, is hot flashes. I've been having those since before tamoxifen when chemo put me into instant menopause (did you know aggressive chemo regimens did that?), but tamoxifen can keep them coming. In my case, after almost a year on tamoxifen and a year and a half since chemo, they're getting less frequent, but still there.
The other one lots of women talk about is weight gain. I haven't had that one, or at least not that I couldn't better correlate to excess ice cream and lack of exercise, and my oncologist says that one hasn't been shown in clinical trials and people seeing it may really be seeing their metabolism slow down as they get a bit older. But it's one people talk about--when the no-tamox woman in my exercise group heard I was taking it, the first thing she asked me was whether I gained a lot of weight on it.
Joint pain is also mentioned a fair amount. I wonder about my current hip thing, but it's pretty constant and doesn't move from joint to joint and it does seem better after almost 2 weeks of rest, so probably not, but who can say for sure?
But aside from those, which, let's face it, are annoying but not serious, there are some rare but serious side effects like blood clots, cysts, thickened uterine linings, and in rare cases uterine cancer. And if you read all the things that don't come out in studies but people blame on tamoxifen? Lets just say it covers a lot of ground.
So, why do I take it?
Because, simply put, it gives me a much better shot at staying alive. Tamoxifen adds 18% to my odds of living past 50--for those of you who care about stats, that's absolute risk, not relative, so 18 out of every 100 women in my position (Stage III, grade 3, and some other particulars that matter) would be dead in 10 years were it not for tamoxifen.
Let that one sink in for a minute.
How much it helps any one person depends on the characteristics of her particular cancer and what your risks of metastasis (aka stage IV, cancer back in places like your brain, liver, lungs, bones) are in the first place.
And that's something your oncologist can talk over with you.
But, for many women, myself included, the risk of dangerous side effects is so much lower than the risk of cancer returning. And once cancer returns outside the breast, you may be able to keep it contained for some time, but you're pretty much guaranteed to die of cancer (eventually, hopefully) and be in treatment on a constant basis before that.
So, knowing that, I pretty much willed myself to be grateful for tamoxifen. I decided to make it my new best friend, because, really, working daily to save my life is a pretty friendly thing to do.
This is what I believe about tamoxifen:
Go on, just look at any forum for breast cancer survivors. Find a couple of survivors and ask them what they think about it. Join me at my cancer rehab exercise group, very first day a long-term survivor there brought up how she refused to take it all those years ago and, hey, still alive thank you very much.
As for me, I love the stuff.
Tamoxifen blocks estrogen receptors on cancer cells--in some other parts of the body it acts like estrogen and in some it also blocks. Many breast cancers are what's called "hormone positive" which means they feed, in part, on estrogen (and progesterone, too, but it's related). And, thanks to tamoxifen, if you have this ER+ kind of cancer, it's considered a good thing compared to ER- because drugs like tamoxifen can help keep it at bay.
Tamoxifen has been around a long time, it's been generic for over a decade and was, of course, patented before that. There are other options for women who have gone through menopause (either natural or long enough from chemo to know it's permanent) and don't have bone loss or certain other conditions, but for many women, women like me, tamoxifen is the only real game in town.
And, unlike chemo and radiation, you keep your hair, don't lose your white blood cells, don't get nausea or neuropathy or any of the other not so fun side effects, and it's just a pill to swallow and you're done.
So, you may be asking, if tamoxifen is so wondrously fabulous, what's not to love?
Well, it's not without side effects, and there's lots of discussion about them, and, frankly, lots of fear.
The biggest side effect for many people, myself included, is hot flashes. I've been having those since before tamoxifen when chemo put me into instant menopause (did you know aggressive chemo regimens did that?), but tamoxifen can keep them coming. In my case, after almost a year on tamoxifen and a year and a half since chemo, they're getting less frequent, but still there.
The other one lots of women talk about is weight gain. I haven't had that one, or at least not that I couldn't better correlate to excess ice cream and lack of exercise, and my oncologist says that one hasn't been shown in clinical trials and people seeing it may really be seeing their metabolism slow down as they get a bit older. But it's one people talk about--when the no-tamox woman in my exercise group heard I was taking it, the first thing she asked me was whether I gained a lot of weight on it.
Joint pain is also mentioned a fair amount. I wonder about my current hip thing, but it's pretty constant and doesn't move from joint to joint and it does seem better after almost 2 weeks of rest, so probably not, but who can say for sure?
But aside from those, which, let's face it, are annoying but not serious, there are some rare but serious side effects like blood clots, cysts, thickened uterine linings, and in rare cases uterine cancer. And if you read all the things that don't come out in studies but people blame on tamoxifen? Lets just say it covers a lot of ground.
So, why do I take it?
Because, simply put, it gives me a much better shot at staying alive. Tamoxifen adds 18% to my odds of living past 50--for those of you who care about stats, that's absolute risk, not relative, so 18 out of every 100 women in my position (Stage III, grade 3, and some other particulars that matter) would be dead in 10 years were it not for tamoxifen.
Let that one sink in for a minute.
How much it helps any one person depends on the characteristics of her particular cancer and what your risks of metastasis (aka stage IV, cancer back in places like your brain, liver, lungs, bones) are in the first place.
And that's something your oncologist can talk over with you.
But, for many women, myself included, the risk of dangerous side effects is so much lower than the risk of cancer returning. And once cancer returns outside the breast, you may be able to keep it contained for some time, but you're pretty much guaranteed to die of cancer (eventually, hopefully) and be in treatment on a constant basis before that.
So, knowing that, I pretty much willed myself to be grateful for tamoxifen. I decided to make it my new best friend, because, really, working daily to save my life is a pretty friendly thing to do.
This is what I believe about tamoxifen:
- It is not a money making ploy by "Big Pharma" and your doctor doesn't make money by prescribing it to you! Come on, it's generic and has been for years--no pharmaceutical reps are pushing it to doctors, no one is fudging the figures for the past 20 years. That's just silly. (I'm planning on addressing this kind of thing more in a future post, but I need to get it out while I'm on the tamoxifen topic)
- There can be some annoying side effects, but for me and many other women, it's a choice between hot flashes and greatly increased odds of death--trust me, I can buck up and take the annoying side effects in exchange for, you know, life.
- There are some risky side effects, but if you're concerned, talk to your oncologist. No really, sit down and talk to your oncologist. That's what you pay her or him for. Your oncologist has the figures and can talk to you about them. But if you have a 0.1% chance of blood clots with it and a 18% greater chance of being dead without it, well, you've probably placed bets with worse odds than that.
- The annoying side effects stop when the tamoxifen stops. A lot of women seem to be afraid to even start taking it, but if it gives you real trouble, you can always stop taking it (but, please at least talk to your doctor about substitutes (like ovarian suppression and AIs) that might be better for you).
- The annoying side effects may get better with time. It's anecdotal, but lots of women say they do and that seems to be the case for me, too. They're now saying 10 years on tamoxifen is a good idea, but remember you may very well find it's 1 year of hot flashes and 9 years of perfectly normal life.
- There are some things available that can mitigate the side effects--if you're having a really hard time, talk to your doctor before you just up and quit. There may be something easy you can do to fix the problem and still get that better shot at living.
- Tamoxifen is tamoxifen. You may be the classic black box warning for some other drug, but that isn't much of a predictor for how tamoxifen will interact with your system.
- The truly sucky thing about cancer and mets is there are no do-overs. With all this cancer stuff it's true, and it stinks. There really is no, "I'll try x and if it doesn't work, then I'll do the something else," and that scary. It's literally life and death here. Sobering, frightening, but maybe also focusing in its own way.
It's kind of funny, I hate disagreeing and generally avoid confrontation and confrontational topics. I guess this tamoxifen thing has been kicking around in my head too long and seems to have built its own soapbox. Which I seem to have been all too glad to step on and start preaching.
But, tamoxifen is important to me. If there were 10 of me in a room, two of us would have our lives saved by it. And I hate the sweaty, blushy hot flashes. I hate thinking about blood clots and uterine cancer. And if there is weight gain to be had, that's not something I'd welcome with open arms.
But more than those things I hate wondering if I will live long enough to see my girl grow up, see my unmarried stepkids get married and my married stepson start a family. I want to grow old with my husband and see how this story ends.
And if tamoxifen can help me make that happen, I am grateful. Grateful enough to endure some hot flashes and joint aches if that's the price of living.
Wednesday, November 13, 2013
And now for something completely different....
This post is not about how I found out I had cancer.
I was planning on putting those posts together in order, getting it all down and sort of setting the stage for how I got to where I am today. But honestly? Even this much later, it's hard to revisit.
I feel like it's important to get it all down for my own reference as those early days get smaller and smaller in my rear view mirror, but also in the off chance that someone else is going through it who happens upon my blog and can benefit from my story.
But as I get closer to those early days of diagnosis up to surgery, the more I want to once again make it all go away.
I guess the good news is, with time and my doctors, I did make it all go away (ha!). Those days are, fortunately, a year and a half behind me now. And, while at the time I wasn't entirely sure I'd ever have another day where I didn't feel that creeping, clawing shadow of panic in the pit of my stomach lurking around all of the time, I'm happy to report that it's mostly a memory.
Strangely enough, even the times I've been afraid the cancer beast was back and I'd be fighting stage IV, there's been panic, but not the same deep-seated fear that I felt when I first found out. I know I could still surprise myself, but I think maybe I've been on this cancer train long enough to get used to it, long enough to know there's a lot of stuff to throw at the monster before you're completely out of ammo, and long enough to know that I have allies who are ready and willing to help me get through what I need to get through (in no particular order: my family, my friends, my God, my church, my doctors).
And, even though I don't want to think about it, that means even helping me get through an ending that comes much sooner than I'd like it to.
But, yeah, that would suck, so I hope it doesn't work out that way!
So, like I said, going back in time is hard, and I'm taking a little break from it for now. Life right now is very good. I'm feeling well, loving my daughter, stepkids, and husband, living like a totally normal person, and only occasionally worrying about the cancer making an encore appearance.
I wish I could go back and tell myself that it would get to be this way again, but the best I can do is tell myself now, and, if you, my reader, happen to be in the beginning of this journey, tell you: there will be days where breathe and sleep and laugh like normal again, whole weeks where you don't worry about leaving your family to fend for themselves without you, long stretches where you don't look at everything you see through the lens of wondering if you'll live long enough to see how it ends, and even times when you will procrastinate and waste time doing silly stuff (or even stupid stuff) without feeling like you're blowing what little time you have.
I probably wouldn't have believed me if I could go back and tell myself that, but I swear it, it's all true.
I was planning on putting those posts together in order, getting it all down and sort of setting the stage for how I got to where I am today. But honestly? Even this much later, it's hard to revisit.
I feel like it's important to get it all down for my own reference as those early days get smaller and smaller in my rear view mirror, but also in the off chance that someone else is going through it who happens upon my blog and can benefit from my story.
But as I get closer to those early days of diagnosis up to surgery, the more I want to once again make it all go away.
I guess the good news is, with time and my doctors, I did make it all go away (ha!). Those days are, fortunately, a year and a half behind me now. And, while at the time I wasn't entirely sure I'd ever have another day where I didn't feel that creeping, clawing shadow of panic in the pit of my stomach lurking around all of the time, I'm happy to report that it's mostly a memory.
Strangely enough, even the times I've been afraid the cancer beast was back and I'd be fighting stage IV, there's been panic, but not the same deep-seated fear that I felt when I first found out. I know I could still surprise myself, but I think maybe I've been on this cancer train long enough to get used to it, long enough to know there's a lot of stuff to throw at the monster before you're completely out of ammo, and long enough to know that I have allies who are ready and willing to help me get through what I need to get through (in no particular order: my family, my friends, my God, my church, my doctors).
And, even though I don't want to think about it, that means even helping me get through an ending that comes much sooner than I'd like it to.
But, yeah, that would suck, so I hope it doesn't work out that way!
So, like I said, going back in time is hard, and I'm taking a little break from it for now. Life right now is very good. I'm feeling well, loving my daughter, stepkids, and husband, living like a totally normal person, and only occasionally worrying about the cancer making an encore appearance.
I wish I could go back and tell myself that it would get to be this way again, but the best I can do is tell myself now, and, if you, my reader, happen to be in the beginning of this journey, tell you: there will be days where breathe and sleep and laugh like normal again, whole weeks where you don't worry about leaving your family to fend for themselves without you, long stretches where you don't look at everything you see through the lens of wondering if you'll live long enough to see how it ends, and even times when you will procrastinate and waste time doing silly stuff (or even stupid stuff) without feeling like you're blowing what little time you have.
I probably wouldn't have believed me if I could go back and tell myself that, but I swear it, it's all true.
Tuesday, November 12, 2013
How I discovered I was growing cancer, part 2
So on my last post I left off with a scheduled diagnostic mammo and ultrasound. God bless the wonderful woman in scheduling who lead the charge to get me in for the imaging and follow-up with a (now "my") breast surgeon all on one day within 3 days of my gyn appointment.
The mammo was fairly uninteresting from a patient point of view, but the ultrasound was where I started to understand what was really going on.
My lump barely showed on the US, the technologist (wonderful calm and caring woman) could feel the lumps but had to do some work to image the shadowy difference on the US.
I think the procedures are probably a little different from facility to facility, but where I receive my care the radiologist came in at the end of the US exam to look at the results, talk to the ultrasonographer, and talk to me.
Now, radiologists a lot of times get a reputation as being something akin to cave-dwellers. Diagnostic imaging has changed the face of medicine and radiologists--those are the doctors who read images, the techs who take them are radiologic (or MRI or CT or whatever) technologists--oftentimes spend their day in dimly-lit rooms looking at images and never having to speak to a single patient. The reputation is more or less based on the kind of person who would think that was a great way to spend a day.
Fortunately for me, there are some who seem to go into the specialty for other reasons, or at least can make a successful switch to patient interaction mode when need be.
I was lucky to have the kind with good people skills.
So, she comes into the room and talks with me and the ultrasonographer. She tells me there were calcifications on the mammogram that were worrying her. I said something like, "so they're not cysts?" and she said they were not.
Honestly, it wasn't what she said but how she said it that really hit me. Later, between that visit and the results of my biopsy, my mom tried to tell me I was worrying for nothing because she googled it and lots of people have calcificatitons (I believe she was going for sort of advanced technique in, "there, there, it's not so bad,"). All I can say was the radiologist's tone and serious face made it pretty clear that these were not the kind of calcifications that usually mean nothing. And the "not cysts" statement had an underlying unspoken, "No way in heck are these just cysts" lurking somewhere just beneath it.
So that's when I began to understand I could be in some serious trouble.
A few hours after the ultrasound, I saw the breast surgeon for the first time--my breast surgeon is great at talking with people, great at explaining things, great at making you feel comfortable, like my radiologist he goes against type--he talked a bit about the imaging reports and mentioned that they didn't image like most cancer but they were still suggestive.
"Suggestive of...?" I asked.
"Of cancer," he clarified.
Ok, I really did know the entire day was more or less centered around looking for cancer, but it just seemed so otherworldly, I couldn't quite make my brain fill it in without hearing it flat out.
So, as he suggested, we scheduled a biopsy a few days later, at the end of the week, and a follow-up with him in the middle of the next week. Since you've seen the title of my blog and are, no doubt, more than smart enough to put two and two together, you probably already know how that biopsy worked out for me.
The mammo was fairly uninteresting from a patient point of view, but the ultrasound was where I started to understand what was really going on.
My lump barely showed on the US, the technologist (wonderful calm and caring woman) could feel the lumps but had to do some work to image the shadowy difference on the US.
I think the procedures are probably a little different from facility to facility, but where I receive my care the radiologist came in at the end of the US exam to look at the results, talk to the ultrasonographer, and talk to me.
Now, radiologists a lot of times get a reputation as being something akin to cave-dwellers. Diagnostic imaging has changed the face of medicine and radiologists--those are the doctors who read images, the techs who take them are radiologic (or MRI or CT or whatever) technologists--oftentimes spend their day in dimly-lit rooms looking at images and never having to speak to a single patient. The reputation is more or less based on the kind of person who would think that was a great way to spend a day.
Fortunately for me, there are some who seem to go into the specialty for other reasons, or at least can make a successful switch to patient interaction mode when need be.
I was lucky to have the kind with good people skills.
So, she comes into the room and talks with me and the ultrasonographer. She tells me there were calcifications on the mammogram that were worrying her. I said something like, "so they're not cysts?" and she said they were not.
Honestly, it wasn't what she said but how she said it that really hit me. Later, between that visit and the results of my biopsy, my mom tried to tell me I was worrying for nothing because she googled it and lots of people have calcificatitons (I believe she was going for sort of advanced technique in, "there, there, it's not so bad,"). All I can say was the radiologist's tone and serious face made it pretty clear that these were not the kind of calcifications that usually mean nothing. And the "not cysts" statement had an underlying unspoken, "No way in heck are these just cysts" lurking somewhere just beneath it.
So that's when I began to understand I could be in some serious trouble.
A few hours after the ultrasound, I saw the breast surgeon for the first time--my breast surgeon is great at talking with people, great at explaining things, great at making you feel comfortable, like my radiologist he goes against type--he talked a bit about the imaging reports and mentioned that they didn't image like most cancer but they were still suggestive.
"Suggestive of...?" I asked.
"Of cancer," he clarified.
Ok, I really did know the entire day was more or less centered around looking for cancer, but it just seemed so otherworldly, I couldn't quite make my brain fill it in without hearing it flat out.
So, as he suggested, we scheduled a biopsy a few days later, at the end of the week, and a follow-up with him in the middle of the next week. Since you've seen the title of my blog and are, no doubt, more than smart enough to put two and two together, you probably already know how that biopsy worked out for me.
Sunday, November 10, 2013
How I discovered I was growing cancer in my breast, part 1
I found it accidently. It was a total fluke and I can only think it was a gift from God that lead my hand to brush one of the lumps when it did.
I had just gotten back from a spur of the moment fabulous vacation to Colonial Williamsburg with my daughter--my husband and I decided she and I should take the opportunity to do this because time moves so fast and in a few years she would be in high school and a few after that she'd be out the door. We were thinking about needing to take the opportunity to spend time together while we could.
Who knew that would be so prophetic?
So there I was changing clothes, and for whatever reason my hand just brushed against this lump. I don't have any history of breast cancer or even much history of other cancer in my family, so it didn't really occur to me to panic. My entire thought process was more like, "What the hell is that?"
So felt the lump and around the lump and felt another lump on another part of the same breast. I thought it was weird, but I wasn't worried, because I was healthy and young and had had a clean mammogram 6 months before (my very first (and last) screening mammogram ever, I was just 41 so I was just at the start of my recommended mammo age)--besides what were the odds?
I googled it and decided I should probably wait until after my next period to see what happened, apparently cysts come and go with hormones that way. But 2 weeks later the lumps were still there.
So, at my husbands urging I made an appointment with the nurse practitioner at my gyn's office. I really wasn't that concerned--as my mother-in-law would say, I was too green to burn. I actually thought about putting it off and seeing what the lumps did--I'd recently had a work up for ovarian pain that turned up nothing (although after my cancer diagnosis I found out what was really causing that pain--a singularly massive kidney stone, but that's another story for another day), and I wasn't eager to continue feeling like I was always worrying about things that didn't show up anywhere.
The nurse practitioner felt the lumps and said she didn't think they were anything to worry about but scheduled me for a diagnostic mammogram and ultrasound a couple of days later, to be sure.
Still I was thinking no big deal. I was unhappy to have to get another mammogram, and felt like I was probably wasting a lot of people's time, and, as Alfred E. Neuman would say, "What? Me worry?"
Yep, I was definitely too green to burn.
I had just gotten back from a spur of the moment fabulous vacation to Colonial Williamsburg with my daughter--my husband and I decided she and I should take the opportunity to do this because time moves so fast and in a few years she would be in high school and a few after that she'd be out the door. We were thinking about needing to take the opportunity to spend time together while we could.
Who knew that would be so prophetic?
 |
| On our last evening at Williamsburg my daughter danced in the rain. |
So there I was changing clothes, and for whatever reason my hand just brushed against this lump. I don't have any history of breast cancer or even much history of other cancer in my family, so it didn't really occur to me to panic. My entire thought process was more like, "What the hell is that?"
So felt the lump and around the lump and felt another lump on another part of the same breast. I thought it was weird, but I wasn't worried, because I was healthy and young and had had a clean mammogram 6 months before (my very first (and last) screening mammogram ever, I was just 41 so I was just at the start of my recommended mammo age)--besides what were the odds?
I googled it and decided I should probably wait until after my next period to see what happened, apparently cysts come and go with hormones that way. But 2 weeks later the lumps were still there.
So, at my husbands urging I made an appointment with the nurse practitioner at my gyn's office. I really wasn't that concerned--as my mother-in-law would say, I was too green to burn. I actually thought about putting it off and seeing what the lumps did--I'd recently had a work up for ovarian pain that turned up nothing (although after my cancer diagnosis I found out what was really causing that pain--a singularly massive kidney stone, but that's another story for another day), and I wasn't eager to continue feeling like I was always worrying about things that didn't show up anywhere.
The nurse practitioner felt the lumps and said she didn't think they were anything to worry about but scheduled me for a diagnostic mammogram and ultrasound a couple of days later, to be sure.
Still I was thinking no big deal. I was unhappy to have to get another mammogram, and felt like I was probably wasting a lot of people's time, and, as Alfred E. Neuman would say, "What? Me worry?"
Yep, I was definitely too green to burn.
Saturday, November 9, 2013
Post 2, in which I live to fight another day
Saying, "Thank you, God!" a lot over the past few days. My hip is irritated and has some inflammation but does not have any apparent cancer. Thank you, God!
So, I remain stage IIIa and continue on my current path of tamoxifen (an estrogen blocker because my particular cancer feeds on estrogen) and efforts at healthy eating, with a little break from my efforts at getting enough exercise in a attempt to rest the hip.
A recurrence scare is (obviously!) no fun. It's terrifying for me and terrifying for my family. But, in a strange way, I think it has a weird bright side--it forces me to face the possibility of progressing to stage IV and helps renew my determination to do what I can to prevent that.
To be very clear, especially to anyone whose view of breast cancer is mainly happy partying women in pink tiaras, tutus, and boas, all the early detection and treatment in the world can not prevent all breast cancers from progressing. Plus, we can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.
Let me repeat that, all the early detection and treatment in the world can not prevent all breast cancers from progressing. We can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.
The rearview mirror is shiny clean, but the windshield is pretty cloudy.
But there are things that studies have shown statistically decrease the odds of moving to stage IV, and those include taking my tamoxifen (which is not without side effects, but better than terminal cancer, at least in my book), eating a healthy diet with lots of fruits and vegetables, maintaining a healthy weight, and getting enough exercise (interestingly enough, that's independent of any weight-loss it may add to).
Since we all know how much fun those non-pill activities can be in practice--let's face it, they sound good, but who really wouldn't rather just eat a cookie and not sweat?--a little renewed focus can be a good thing.
And so I move on, doing the best I can to do what I can and keep on the fine line between being vigilant and careful, and living life without fear. Or without excessive fear. Or with occasional excessive fear but not debilitating fear. And gratitude. Always gratitude.
So, I remain stage IIIa and continue on my current path of tamoxifen (an estrogen blocker because my particular cancer feeds on estrogen) and efforts at healthy eating, with a little break from my efforts at getting enough exercise in a attempt to rest the hip.
A recurrence scare is (obviously!) no fun. It's terrifying for me and terrifying for my family. But, in a strange way, I think it has a weird bright side--it forces me to face the possibility of progressing to stage IV and helps renew my determination to do what I can to prevent that.
To be very clear, especially to anyone whose view of breast cancer is mainly happy partying women in pink tiaras, tutus, and boas, all the early detection and treatment in the world can not prevent all breast cancers from progressing. Plus, we can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.
Let me repeat that, all the early detection and treatment in the world can not prevent all breast cancers from progressing. We can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.
The rearview mirror is shiny clean, but the windshield is pretty cloudy.
But there are things that studies have shown statistically decrease the odds of moving to stage IV, and those include taking my tamoxifen (which is not without side effects, but better than terminal cancer, at least in my book), eating a healthy diet with lots of fruits and vegetables, maintaining a healthy weight, and getting enough exercise (interestingly enough, that's independent of any weight-loss it may add to).
Since we all know how much fun those non-pill activities can be in practice--let's face it, they sound good, but who really wouldn't rather just eat a cookie and not sweat?--a little renewed focus can be a good thing.
And so I move on, doing the best I can to do what I can and keep on the fine line between being vigilant and careful, and living life without fear. Or without excessive fear. Or with occasional excessive fear but not debilitating fear. And gratitude. Always gratitude.
Wednesday, November 6, 2013
That's how it goes
I've been thinking for a while about starting a blog to share my thoughts and experiences after completing cancer treatment. I was diagnosed with Stage IIIa Grade 3 breast cancer in the spring of 2012 and completed surgery, chemo, and radiation therapy in January of 2013.
The thing with being done with cancer is that you're never really done with cancer. Aches and pains, coughs, and nerve pins that would otherwise be "getting older" are always ominous. You never know if cancer cells are hiding dormant and ready to spring to life. Plus, you never know if maybe they've already sprung.
I know I sound inappropriately pessimistic, especially since I'm supposed to be all decked out in pink boas and tiaras and singing about how strong and brave I am. But, truth is, while I am usually very cheerful (no, really), I also believe my oncologist when she says I have a 1 in 3 chance of having to go back into battle with this beast sooner or later. Also, for what it's worth, I am far more compliant and hard working than I am strong or brave, but I think those qualities will still do in a pinch.
In the 10 months since I completed active treatment, there have been 3 significant scares, 2 clean MRIs, and one worrisome X-ray with a follow-up CT scan that I get to find out more about later today. Seems like as good a time as any to start a blog, right?
Which also means this may be a blog about moving on and dealing with the idea of reoccurrence, or it may suddenly become a blog about living with metastatic disease--stay tuned to find out (see, I don't even have readers yet and already my blog has stay-tuned surprises)!
So, those are the basics for where you find me. Welcome to my blog, and thank you for being one of my readers and joining me for this ride!
And away we go....
The thing with being done with cancer is that you're never really done with cancer. Aches and pains, coughs, and nerve pins that would otherwise be "getting older" are always ominous. You never know if cancer cells are hiding dormant and ready to spring to life. Plus, you never know if maybe they've already sprung.
I know I sound inappropriately pessimistic, especially since I'm supposed to be all decked out in pink boas and tiaras and singing about how strong and brave I am. But, truth is, while I am usually very cheerful (no, really), I also believe my oncologist when she says I have a 1 in 3 chance of having to go back into battle with this beast sooner or later. Also, for what it's worth, I am far more compliant and hard working than I am strong or brave, but I think those qualities will still do in a pinch.
In the 10 months since I completed active treatment, there have been 3 significant scares, 2 clean MRIs, and one worrisome X-ray with a follow-up CT scan that I get to find out more about later today. Seems like as good a time as any to start a blog, right?
Which also means this may be a blog about moving on and dealing with the idea of reoccurrence, or it may suddenly become a blog about living with metastatic disease--stay tuned to find out (see, I don't even have readers yet and already my blog has stay-tuned surprises)!
So, those are the basics for where you find me. Welcome to my blog, and thank you for being one of my readers and joining me for this ride!
And away we go....
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