Watching a close family member deal with the early days of cancer treatment is reminding me of cancer's biggest lesson: You Are Not In Control.
Those first few days and weeks were mind-numbing (or head-spinning; or both). You don't have enough information to make decisions, but you have to make decisions immediately. You are tasked with quarterbacking your own medical care though you do not have the lifetime of learning and experience that your doctors have. You must choose between providers without knowing what defines quality, or how it's measured. There is absolutely no way to find a shortcut solution to the months of pain and fear and difficulty that await you; and once treatment starts and you're pumped full of poisons and you're thrown vehemently off balance by nausea or bone pain or sadness or dying cells, there is exactly nothing that you can do that restores that balance until time and healing take their own natural courses.
I have always been a person who saw exactly what I wanted in any situation, and could figure out pretty quickly how to attain it. I am not passive. I confront, I pursue, I accomplish.
But cancer doesn't care about any of this. It laughs at initiative, scoffs at competence. The most painful loss in cancer is the loss of belief in control. Unlike a body part, removed surgically and cleanly under anesthesia, control is ripped away painfully--bloody and ragged and unwilling.
Recovering from cancer restores some of the illusion of control, but I gotta tell you, it is now impossible to revert to the full belief. There are situations happening in my life--I so wish I could share them, but for so many different reasons, and to protect so many different people, I simply can't. But I face these difficult situations and all I can see is that every alternative is fraught and imperfect, and there is exactly nothing that I can do to sidestep all pain and trouble. Perhaps I'd have learned this lesson without cancer. But I learned it with cancer, and life just keeps reviewing the lesson.
Wednesday, December 17, 2008
Tuesday, November 25, 2008
The Case of the Disappearing Cancer
I've been sent articles several times already about this Norwegian study that concluded that some breast (and other) cancers may spontaneously disappear, without treatment. I don't really have much comment of my own, because before I could really think deeply about the study, I read this fantastic response by a "skeptical OB-GYN," who writes a terrific, point-by-point analysis. Some highlights:
The study only looks at incidence of cancer. It does not look at outcome and life expectancy. If it turns out that the women in the study group have a much lower incidence of death from breast cancer, because they are treated early and aggressively, it will justify the apparent over diagnosis of breast cancer.And,
there is no way to tell the difference on mammography, or by any other technique, between the cancers that will disappear and the ones that will go on and kill the woman.To me, these two quotes really say everything we need to know at this point. However, as winter comes and my summer tan fades, and I note in the mirror greater evidence of the premature aging effects of chemo; as I read on the web that a close family member's kind of lung cancer is often treated with Taxol, and I think back on the bone pain and the horrible allergic reactions; as I think about the months of my life "lost" to sitting miserably on the couch; as I think of the awfulness that is cancer treatment, I certainly hope that researchers follow up on this study and find a way to make the important distinctions. Let's get rid of chemo for anyone for whom we can!
Tuesday, November 11, 2008
"Good" cancers
I've been gone for a long time. Mostly that is because of work--I've had a highly absorbing course to plan and then start teaching. I'm still in the midst of it, and it leaves little time for anything else. A little less, it's because I reached a point of feeling exhausted by the constant recognition of being a cancer survivor. It'll probably never be possible to see cancer as something that happened in the past, like that one embarrassing drunken night in college with my guy friend, which the two of us immediately pretended never happened; or the period of my life when I was unable to have an effective argument because I'd lose track of the logical flow of speech. Those things will never happen again. Cancer might.
Anyway, on that topic (somewhat), here's a blog piece that appeared in the NY Times today, by a guy with prostate cancer who rails against the notion of "good" cancer.
And let me just send a shout-out to a loved one who also has prostate cancer, but on top of that is in the hospital recovering from surgery for lung cancer, which most people would decidedly not call a "good" cancer. He is enormously healthy and I think he is as likely as anyone to beat cancer down again. (He had it once before, over 4 years ago, and was treated successfully with surgery--this is a new primary cancer, not a recurrence.) But again, cancer sucks. It just sucks. It keeps hitting all these damn people I care about, and even if they (we) survive, it still takes things away. Months... Years... Lungs... Breasts... And any illusion that any part of life is the smallest bit fair.
I want to end on that angry note, but I can't. I'm also enormously excited and have to acknowledge the election of Barack Obama. This is a man whose mother and grandmother both died of cancer. He knows the cost. In his infomercial, he said that his mother's death taught him that you have to seize opportunities when they happen, and suggested that that's one reason why he chose to run for President so early. He has a lot of critical priorities and I don't know where cancer falls on his list, but I can't help but feel hope, that this President really understands what a scourge cancer is, and how unfair and brutal it is, and how we absolutely must defeat it. Now that's a war I can get behind.
Anyway, on that topic (somewhat), here's a blog piece that appeared in the NY Times today, by a guy with prostate cancer who rails against the notion of "good" cancer.
And let me just send a shout-out to a loved one who also has prostate cancer, but on top of that is in the hospital recovering from surgery for lung cancer, which most people would decidedly not call a "good" cancer. He is enormously healthy and I think he is as likely as anyone to beat cancer down again. (He had it once before, over 4 years ago, and was treated successfully with surgery--this is a new primary cancer, not a recurrence.) But again, cancer sucks. It just sucks. It keeps hitting all these damn people I care about, and even if they (we) survive, it still takes things away. Months... Years... Lungs... Breasts... And any illusion that any part of life is the smallest bit fair.
I want to end on that angry note, but I can't. I'm also enormously excited and have to acknowledge the election of Barack Obama. This is a man whose mother and grandmother both died of cancer. He knows the cost. In his infomercial, he said that his mother's death taught him that you have to seize opportunities when they happen, and suggested that that's one reason why he chose to run for President so early. He has a lot of critical priorities and I don't know where cancer falls on his list, but I can't help but feel hope, that this President really understands what a scourge cancer is, and how unfair and brutal it is, and how we absolutely must defeat it. Now that's a war I can get behind.
Saturday, September 06, 2008
There's a new ad on my blog
Look in the right-hand column. See the bobbing head? (I am not wild about that, but it came with animation, so there we are.)
Ryan, a Hodgins lymphoma survivor, took the lemons of his cancer diagnosis and made lemonade--and lemon hats, lemon shirts, lemon coffee mugs... Seriously, I like the irreverent attitude and non-pinkness of this swag, so if you or your cancer-stricken/cancer-surviving loved ones are looking for the perfect statement, go buy from Ryan. (I don't even get a cut!!)
Here's the one I'm planning to get (clickable image):
Ryan, a Hodgins lymphoma survivor, took the lemons of his cancer diagnosis and made lemonade--and lemon hats, lemon shirts, lemon coffee mugs... Seriously, I like the irreverent attitude and non-pinkness of this swag, so if you or your cancer-stricken/cancer-surviving loved ones are looking for the perfect statement, go buy from Ryan. (I don't even get a cut!!)
Here's the one I'm planning to get (clickable image):
Sunday, August 31, 2008
Almost unimaginable
When I was first diagnosed, my oncologist talked seriously with Noah and me about whether we wanted to have children. Chemo often puts women around my age--late 30s and up--into early menopause. Sometimes it's temporary, just during treatment (as it turned out in my case); other times, it just keeps going after treatment.
We were advised to consider carefully whether we wanted to pursue egg harvesting or in vitro before I started chemo. It took about 2 seconds to decide that no, if the dice rolled that way, we were perfectly willing to adopt one of the many children out there needing a family and a better life; let's get going and cure me now, thank you.
As easy as that decision was for me, I'm sure it's quite tough for many women. And it seems unimaginably agonizing to think of learning you have breast cancer while you're already pregnant. The NY Times' latest thought-provoking breast cancer article is a long piece about the current state of treatment. It's really amazing--it appears that pregnant mothers can receive chemo through most of pregnancy without apparent harm to the developing child. Nonetheless, the depiction of new mothers--having just given birth, dealing with a newborn, and now going through more rounds of chemo--just makes me shudder. It is hard to go through cancer treatment. I stand and salute the women who do it with that much more at stake, and that much more to make it tough!
We were advised to consider carefully whether we wanted to pursue egg harvesting or in vitro before I started chemo. It took about 2 seconds to decide that no, if the dice rolled that way, we were perfectly willing to adopt one of the many children out there needing a family and a better life; let's get going and cure me now, thank you.
As easy as that decision was for me, I'm sure it's quite tough for many women. And it seems unimaginably agonizing to think of learning you have breast cancer while you're already pregnant. The NY Times' latest thought-provoking breast cancer article is a long piece about the current state of treatment. It's really amazing--it appears that pregnant mothers can receive chemo through most of pregnancy without apparent harm to the developing child. Nonetheless, the depiction of new mothers--having just given birth, dealing with a newborn, and now going through more rounds of chemo--just makes me shudder. It is hard to go through cancer treatment. I stand and salute the women who do it with that much more at stake, and that much more to make it tough!
Thursday, August 21, 2008
Role Models and Broken Records
I was really surprised, and then really happy, to see that Christina Applegate is being so open about her response to her breast cancer. In case you've been on a desert island for the past few days--her mom struggled with breast cancer, surviving it twice, and Christina tested positive for the BRCA-1 gene. This puts her at high risk for getting breast cancer again in the future, so she opted for a double mastectomy, and then went on a morning talk show to tell the world about it.
As a starlet prized for her appearance, this has to be tough, but her attitude is great. And I just love the message it sends to all women who face the reduction or removal of breasts as a result of this disease: You don't have to be ashamed, you don't have to feel invalidated, and your life is far more important than your boobs. Oh, and along with those other women rushing out to buy fake ones anyway, remember you'll have perky ones in the nursing home.
It's no less traumatic to face a mastectomy, I'm sure, just because a celebrity has talked about hers. But it's just one more area of life in which we don't have to be silent, to hide in shame; we can speak out and own our experience, and know that we are still worthwhile and valuable even though something has been taken from us. Damn right!
Finally, I've said it before and I will keep hollering about it: We can cut our risk enormously by just watching what we eat and really exercising. Apparently most Americans already know this, and yet we're still not doing it. Watch a slightly fluffy treatment of the topic by CNN's Sanjay Gupta:
(It's looking like the embed might not be working; if not, here's the link.)
Now, I know it's hard. After losing 37 pounds post-treatment, I recently gained 6 of them back, and now I am having to watch my food strictly once more. (Exercise I have covered, with beach volleyball--go USA!!--at least 6 hours a week.) As I forego bread and use balsamic vinegar in place of salad dressing, I feel some pain. But a) eating healthfully is a lot more fun than going through chemo; and b) my life is too important not to do it!
Edited to add: I've already gotten rid of 3 of the 6, in just a few days. Yay.
As a starlet prized for her appearance, this has to be tough, but her attitude is great. And I just love the message it sends to all women who face the reduction or removal of breasts as a result of this disease: You don't have to be ashamed, you don't have to feel invalidated, and your life is far more important than your boobs. Oh, and along with those other women rushing out to buy fake ones anyway, remember you'll have perky ones in the nursing home.
It's no less traumatic to face a mastectomy, I'm sure, just because a celebrity has talked about hers. But it's just one more area of life in which we don't have to be silent, to hide in shame; we can speak out and own our experience, and know that we are still worthwhile and valuable even though something has been taken from us. Damn right!
Finally, I've said it before and I will keep hollering about it: We can cut our risk enormously by just watching what we eat and really exercising. Apparently most Americans already know this, and yet we're still not doing it. Watch a slightly fluffy treatment of the topic by CNN's Sanjay Gupta:
(It's looking like the embed might not be working; if not, here's the link.)
Now, I know it's hard. After losing 37 pounds post-treatment, I recently gained 6 of them back, and now I am having to watch my food strictly once more. (Exercise I have covered, with beach volleyball--go USA!!--at least 6 hours a week.) As I forego bread and use balsamic vinegar in place of salad dressing, I feel some pain. But a) eating healthfully is a lot more fun than going through chemo; and b) my life is too important not to do it!
Edited to add: I've already gotten rid of 3 of the 6, in just a few days. Yay.
Monday, August 18, 2008
A-ha...It's a theme
Following up on my post from a few days ago: Today, salon.com's advice columnist replies to a letter-writer who, in her 30s, has survived cancer and isn't sure she wants to go back to her exact pre-cancer life. It must be really tough to be filled with a fire for living and have everyone else standing around you with buckets.
The letters section already has a little debate going (and, as of this writing, there are only 5 or 6 letters). Should she do what she wants, bucket brigade be damned, in the spirit of living her life to the fullest? Or should she rein in those impulses, recognize the precious gift that is a community of loved ones in her life, and accept some limitations in exchange for those ties that bind her to others and to this world? It's a hard question, and heck if I know the answer.
The letters section already has a little debate going (and, as of this writing, there are only 5 or 6 letters). Should she do what she wants, bucket brigade be damned, in the spirit of living her life to the fullest? Or should she rein in those impulses, recognize the precious gift that is a community of loved ones in her life, and accept some limitations in exchange for those ties that bind her to others and to this world? It's a hard question, and heck if I know the answer.
Thursday, August 14, 2008
Exercise, again
And again, the NY Times. Today, an article about the benefits of exercise for those undergoing treatment.
Monday, August 11, 2008
Who I was/Who I am
The NY Times, in its ongoing fabulousness, has an article today about coping with identity changes, and I love it.
Two quotes in particular stand out. First,
This is so true. And once the critical illness is over, the permission fades. You were allowed to deviate, given lots of leeway, even permitted to say NO to things and to live your life to maximize health rather than busy-ness. But as time passes, people stop thinking that you are delicate and must be handled with care; they start thinking it's time you stopped whining and started being like everyone else again.
The other quote I loved:
I alluded to this in an early blog post. At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.
What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.
I actually have to fight with myself not to just go the straight denial route, and turn my back on the truth that I had cancer, and ignore anything to do with cancer. Someone close in my social circle just started chemo (her first treatment was on the 2-year anniversary of my last treatment). It is surprisingly hard for me to see her go through this, in part because I just want to deny, deny, deny; and, unexpectedly, her reality becomes a constant undercurrent for me, reminding me of what I experienced and what I am as a result.
Two quotes in particular stand out. First,
A critical illness is like a great permission, an authorization or absolving. It’s all right for a threatened man to be romantic, even crazy, if he feels like it. All your life you think you have to hold back your craziness, but when you’re sick you can let it go in all its garish colors.
This is so true. And once the critical illness is over, the permission fades. You were allowed to deviate, given lots of leeway, even permitted to say NO to things and to live your life to maximize health rather than busy-ness. But as time passes, people stop thinking that you are delicate and must be handled with care; they start thinking it's time you stopped whining and started being like everyone else again.
The other quote I loved:
I wanted to be someone, a recognizable personality, a full-blooded, memorable human being, and not just a cancer patient. I had already lost the person I used to be, that healthy, energetic 45-year-old woman. I wasn’t capable of losing more. Other friends had their own spins on claiming individuality in the cancer world.
I alluded to this in an early blog post. At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.
What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.
I actually have to fight with myself not to just go the straight denial route, and turn my back on the truth that I had cancer, and ignore anything to do with cancer. Someone close in my social circle just started chemo (her first treatment was on the 2-year anniversary of my last treatment). It is surprisingly hard for me to see her go through this, in part because I just want to deny, deny, deny; and, unexpectedly, her reality becomes a constant undercurrent for me, reminding me of what I experienced and what I am as a result.
Sunday, August 03, 2008
Wednesday, July 30, 2008
What Not to Say
Wow, this is a great summary of how to interact with people who have cancer--and it was posted on Craigslist, of all places! Craigslist is totally tha bomb.
I found it thanks to the Imagine Bright Futures blog, one I haven't linked to previously--but will.
I found it thanks to the Imagine Bright Futures blog, one I haven't linked to previously--but will.
Friday, July 25, 2008
Sad news
Randy Pausch has died.
Cancer isn't a test. It doesn't separate the good people from the bad, it doesn't spare those who deserve sparing, it doesn't teach benevolent lessons and then release those who learn properly. It just kills people, indiscriminately, hastily, unfairly, too early and too often.
Cancer isn't a test. It doesn't separate the good people from the bad, it doesn't spare those who deserve sparing, it doesn't teach benevolent lessons and then release those who learn properly. It just kills people, indiscriminately, hastily, unfairly, too early and too often.
Thursday, July 24, 2008
All Clear
The MRI results came back--completely normal. :-)
I go back in 6 months for my regularly-scheduled mammogram, and an ultrasound just for better imaging.
Every time I get news like this it's like I just got my life back again. Which is great. You can find me this weekend, on the beach, playing volleyball. (Or, after dark, analyzing data and writing papers!)
I go back in 6 months for my regularly-scheduled mammogram, and an ultrasound just for better imaging.
Every time I get news like this it's like I just got my life back again. Which is great. You can find me this weekend, on the beach, playing volleyball. (Or, after dark, analyzing data and writing papers!)
Sunday, July 20, 2008
Not quite on topic, but very important
Hi folks--
If you read this blog at all, if you are reading this post, please click over to this other blog, by the family of a 14-year-old girl with a mysterious, undiagnosed, and rapidly degenerative neuromuscular disease. She is running out of time to find a diagnosis and effective treatment--imagine if there were no known treatment for breast cancer, or if we didn't really even know what the problem was! The family is just looking for ANYONE, anywhere, who has experienced similar symptoms--so if you are (or know) a doctor who might have seen such a patient, or if you are (or know) such a patient, please contact them. (The father is a professor in my field at another university.)
Thanks, and this just underscores yet again how randomly cruel life can be.
If you read this blog at all, if you are reading this post, please click over to this other blog, by the family of a 14-year-old girl with a mysterious, undiagnosed, and rapidly degenerative neuromuscular disease. She is running out of time to find a diagnosis and effective treatment--imagine if there were no known treatment for breast cancer, or if we didn't really even know what the problem was! The family is just looking for ANYONE, anywhere, who has experienced similar symptoms--so if you are (or know) a doctor who might have seen such a patient, or if you are (or know) such a patient, please contact them. (The father is a professor in my field at another university.)
Thanks, and this just underscores yet again how randomly cruel life can be.
Friday, July 11, 2008
Needles
One thing I thought cancer might do for me was take away my fear of needles. I always hated them, in any setting. Never worry that I might become a junkie, I always said: the first time I poised that syringe over my delicate inner elbow, I would definitely be scared straight.
I became pretty stoic during the 4 months of chemo (I did not have a port or a pic line--it was a new needle in my left hand, every time; we managed to keep the same vein going for a long time before it threw in the towel and said "find someone else!"), even though I never reached truly blasé. I always asked the lab techs to "stick me" while I wasn't looking; I whimpered a little--no, a lot--when, toward the end of chemo, Lilia had to poke around for a while to find a cooperative vein. But still. I didn't have knots in my stomach beforehand, I wasn't truly freaked out, and it all seemed pretty under control. I figured it was a new era for me, needle-wise.
But it didn't last.
This has been quite the needle week for me. I had to have some fillings repaired by the dentist, and that required numbing my right jaw. I had them give me nitrous oxide while he administered the shots. Of course, I probably could have handled it, but I was a whole lot happier floating several feet away from my body while that needle was probing around my jaw hinge.
And today, I had an MRI. Now, some of you may be thinking that organizing this post around needles is a pretty back-handed way to tell you I had an MRI, so let me be informative. In late spring, I was trying on some clothes when I realized that I had increased a bra cup size on the left (that's the non-cancer side), even though I hadn't really gained any weight. And then I started noticing some aching that didn't seem to correspond with a hormonal cycle. So I called Christy, who said "It's almost certainly nothing," but endorsed the idea of my visiting one of the surgeons out of an abundance of caution.
I saw a new surgeon (Mel has moved on from USC--though I have to admit, I might track him down if I ever need a scalpel wielded again). He did a thorough exam, said it was probably nothing, but felt some lumpiness in the same area where my gynecologist found some lumpiness in December '06. At that time, I had an MRI and ultrasound, and though for a while the medical team thought there might be something to biopsy (again, out of the "abundance of caution"), by the time they went in with a hollow needle, there was no spot looking suspicious anymore.
Well, since it was lumpy again in that area--and I should mention, I am apparently just an extra-lumpy kind of gal--he ordered a new ultrasound. Which was completely, 100% clear and normal. But (always with these abundances of caution) he also ordered an MRI. Which I had today. Which I'll find out about sometime soon. Which I'll let you know about.
And which necessitated another needle--this one in my arm, for an IV push of "contrast dye," which helps illuminate all the booby tissue for better diagnosis. Anyway, this time I was anxious about the needle just like in the old days before chemo. It was like that whole toughening-up experience never happened. Funny. I have been really happy for the "reset" on so many things (getting my hair back, getting my health back, getting my life back). Too bad I also have to get back some things I didn't really miss.
I became pretty stoic during the 4 months of chemo (I did not have a port or a pic line--it was a new needle in my left hand, every time; we managed to keep the same vein going for a long time before it threw in the towel and said "find someone else!"), even though I never reached truly blasé. I always asked the lab techs to "stick me" while I wasn't looking; I whimpered a little--no, a lot--when, toward the end of chemo, Lilia had to poke around for a while to find a cooperative vein. But still. I didn't have knots in my stomach beforehand, I wasn't truly freaked out, and it all seemed pretty under control. I figured it was a new era for me, needle-wise.
But it didn't last.
This has been quite the needle week for me. I had to have some fillings repaired by the dentist, and that required numbing my right jaw. I had them give me nitrous oxide while he administered the shots. Of course, I probably could have handled it, but I was a whole lot happier floating several feet away from my body while that needle was probing around my jaw hinge.
And today, I had an MRI. Now, some of you may be thinking that organizing this post around needles is a pretty back-handed way to tell you I had an MRI, so let me be informative. In late spring, I was trying on some clothes when I realized that I had increased a bra cup size on the left (that's the non-cancer side), even though I hadn't really gained any weight. And then I started noticing some aching that didn't seem to correspond with a hormonal cycle. So I called Christy, who said "It's almost certainly nothing," but endorsed the idea of my visiting one of the surgeons out of an abundance of caution.
I saw a new surgeon (Mel has moved on from USC--though I have to admit, I might track him down if I ever need a scalpel wielded again). He did a thorough exam, said it was probably nothing, but felt some lumpiness in the same area where my gynecologist found some lumpiness in December '06. At that time, I had an MRI and ultrasound, and though for a while the medical team thought there might be something to biopsy (again, out of the "abundance of caution"), by the time they went in with a hollow needle, there was no spot looking suspicious anymore.
Well, since it was lumpy again in that area--and I should mention, I am apparently just an extra-lumpy kind of gal--he ordered a new ultrasound. Which was completely, 100% clear and normal. But (always with these abundances of caution) he also ordered an MRI. Which I had today. Which I'll find out about sometime soon. Which I'll let you know about.
And which necessitated another needle--this one in my arm, for an IV push of "contrast dye," which helps illuminate all the booby tissue for better diagnosis. Anyway, this time I was anxious about the needle just like in the old days before chemo. It was like that whole toughening-up experience never happened. Funny. I have been really happy for the "reset" on so many things (getting my hair back, getting my health back, getting my life back). Too bad I also have to get back some things I didn't really miss.
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