This is the longest I've ever gone without writing here: 26 days. I have been living in a constant state of ennui, which is much more accurate than saying anything about "writer's block." I started writing a novel, a lifelong goal of mine, and got about 15 pages in, and then I stopped that too. I will go back to it--I have promised myself that much. But I have been feeling ambivalent about much more than just writing. Perhaps everything that's happened over the last five and a half years, or the last 40, is catching up to me. I feel vaguely depressed, the opposite of the anxiety that led me to be so active and productive during treatment. I feel isolated in myself and disinterested in general. We have had some fairly stressful times over here over the last month or so for reasons I won't get into, and the reasons I won't get into that are what has led me to write today, after all this time.
People have suggested, in the past, that therapy is a good thing for people with cancer. I'm sure that's true. We thought it might help Augie when he was going through those horrible, crushing night terrors, but it didn't, not really. He liked the therapist and appreciated her general calm. He enjoyed playing with her and talking to her. But his night terrors did not end until my chemo ended. We all knew what was wrong with him and what it would take for him to be less angry: he needed his mother to not have cancer anymore. Of course, I could still have cancer, right now--we don't know. But in his four year old mind, my cancer left with chemo, and he began to sleep peacefully again, no longer fighting death in his dreams.
And so I haven't gone to therapy. And yet, I have, of course, gone to therapy--right here, in this blog. But I know what my problem is. I know what I need to say about it in order to process what is happening, and I would never say it out loud--that's why I write it. I am not denigrating the value of therapy. I am not in denial about the isolating and scary and sad effects of two cancer diagnoses in my thirties. One of my biggest issues has been feeling overwhelmed by all of the things I have to do in my life, as a full time mother and worker and general human being, all while very functionally handling the fact that I have had a very serious and aggressive disease that has shown its intention to stay with me, all while knowing that my power over its return is minimal and that if it decides to go rogue, I will die. So therapy has seemed like one more thing there is to do, and I have chosen to spend time doing other things that make me feel sane, such as work out and write.
But there's another reason I haven't gone to therapy, and it's something that's been true about the way I have seen the world all my life.
I just can't accept that my problems are very meaningful. They are, in one sense. I have written many times about my belief that suffering and grief are real, and that we should bear witness to them, no matter how they manifest.
And yet at the end of the day, it is impossible to deny the suffering and grief that exists in every corner of the world that so far eclipses everything I have experienced or will experience that it seems selfish to focus on how I feel.
I grew up in a house where feelings of self pity were met with comparisons to what Jews had suffered in the Holocaust. It's a long story why that was the case, and it is somewhat beside the point. Eventually I argued with this, when I was maybe 12, and said that I could both acknowledge the immense suffering of people throughout history and have legitimate emotions of my own. My mother heard me, and the comparisons stopped.
The thing is--those comparisons were true. Hearing them shaped me in a way I would never change.
I always think like this, about what people have suffered, about what the ultimate potential is for evil, and my own life is brought into perspective. What's hard now is admitting that I feel I've suffered at all, because it all seems so...pedestrian.
I've written, mostly in my other blog, about sexual abuse and harassment, though I haven't given details about the stories that really matter. I think these things are more important now that I am a parent--my responsibility for other people's lives makes me see my younger self differently. And so I begin to think these things matter, and then I read this:
human trafficking victim says she was raped 43,200 times.
I think about any type of physical suffering, about cancer or all the times I've cheated death, about any kind of pain or even the mortal fear of having the cold metal of a gun at my temple, and then I recognize
130 people killed in terrorist attacks in Paris
150 killed in terrorist attacks in Kenya
7 year old girl found dead in creek 25 minutes after being reported missing from high school football game
nine killed by shooter in church, racism was the motive
man disembowels fiancé with his own hands
mass grave found in Mexico, 60 bodies uncovered
9 year old killed on Chicago's south side was targeted, executed
the headlines that remind us of the refugee crises around the world, the extreme poverty, parents being forced to watch their children's murders, rape camps, bombings.
I am not saying that I find the reality of the world depressing, or that I feel paralyzed by it. What I am saying is that I find the reality of the world to be real. I find it difficult to focus on my own emotions, or to even feel my own emotions in a full way, and that is not to say that I am deadened or detached. I recognize the beauty in life every day, and that is what makes the headlines so astoundingly sad--that there are people who believe it is their right to make others suffer, to attempt to strip the beauty of anyone's individual world away from them. I refuse to sugarcoat the repulsive or attempt to find the positive or the meaning in senseless acts of selfishness that destroy people's lives.
Suffering is real and it is not deserved. Horror is not something that happens to other, lesser people. Death is not always dignified. Everything does not happen for a reason, or at least not a good one.
These statements are not depressing. Perhaps that is what I have been saying for all of these years. Some suffering and pain are just a part of life, but some can be, and should be, stopped. We cannot truly be empathetic if we believe that everything will turn out just fine, as if the world is filled with magic. The magic in the world is created by people who make decisions to make the world a magical place. The horror of the world is created in much the same way. When the magic is broken and horror seeps in, it is not our place to try to justify injustice in order to make ourselves and our chances seem more favorable. It is our place to bear witness, to recognize that the things that happen in the world and that people experience are real. It is our place to try to make sure that fewer horrible things happen. If we cannot realistically do that, we have to at least acknowledge that they have happened. We must recognize that the terrible things that happen could happen to any of us, that odds are just that. If your life has not been pulled out from under you, it is not because you deserved better.
I think about this all the time, about all of the people I am not, and the arbitrary nature of my luck. I do not think I deserve to have had this luck any more than anyone else, but I do hope to live my life in such a way to be worthy of it. I have not felt worthy of late. And so after a long time, I wrote this, because that is what I do. I do not do it because I think my words are important. I do it because words enable me to give power to context and perspective to life. We are all everything to some and nothing to most. Let us focus on the everything.
Sunday, November 15, 2015
Tuesday, October 20, 2015
Day 1,865: ACS' Mammogram Guidelines
This post will be different than most that I write. I'm just providing an explanation and opinion on the new guidelines put forth by the American Cancer Society on mammogram screenings for women.
The short story is that ACS has raised the recommended age for first mammograms from 40 to 45 for women with average breast cancer risk (emphasis mine). At age 55, such women can move from annual mammograms to mammograms every two years. ACS has said that women aged 40-44 should be offered mammograms if they ask (I honestly do not understand how that would work with current insurance company rules).
A lot of people are up in arms about these new recommendations, especially women with breast cancer that was diagnosed prior to age 40. It is an understandable reaction.
I just don't agree with it.
Not that anyone asked me, but I agree with the ACS recommendations on mammograms (I don't agree with the recommendations for clinical breast exams--more on that later). Women with no family history or high risk for breast cancer have never been offered mammograms before age 40 as a matter of course. There are exceptions, of course. However, most of us who were diagnosed before age 40 found the cancer ourselves. We felt a lump or noticed a change in the skin or nipple or realized something was wrong. I found my cancer both times. I had a clean mammogram in May of 2013, and a little more than a month later I found the lump that would lead to my second diagnosis in July 2013. In fact, when the radiologist was attempting to confirm my cancer, she could not find the tumor using mammography--even though she had placed a metal clip inside my breast at the tumor site and was specifically looking for it.
There are a few lessons here that are not just me talking about my experience and expecting it to apply to other women.
One lesson is that ACS is absolutely NOT saying that women who find suspicious masses, confirmed by a doctor, will be denied mammograms if they are under age 40. The fact is that most mammograms offered to young women are done to confirm what is already suspected, not to diagnose cancer that was undetected. There are exceptions--I know that. For example, women who are BRCA positive would be considered exceptions, I would assume, as would women with strong family history of breast cancer. But the new guidelines are for women with NORMAL RISK of breast cancer. And no one is suggesting that mammography would not be used to diagnose women like me--I was a woman with no high risk of breast cancer for the first 34 years of her life. I was years away from my first scheduled mammogram. But when suspicions arose, I underwent a battery of tests, including mammography. ACS is not suggesting a different course of action.
Another lesson is that mammograms are simply poor screening tools for young women. They do not work well for us, and this is a big part of the reason for the change in policy. They do not work well for anyone with dense breast tissue. They carry risks and have high rates of false positives (or, in my case--false negatives). Ultrasound was much more effective for me, both times. I was not even offered a mammogram the first time, as I was still nursing and the radiation would prove harmful to the baby. Once the ultrasound showed three perfect round tumors, however, I did go into mammography. Hell, they gave me a little of everything: 3d mammogram, ultrasound, regular mammo...
Finally, women with high risk of breast cancer have entirely different recommendations. My daughter is considered high risk, because of me. The current recommendation is that she should begin to have mammograms when she is ten years younger than I was at diagnosis. So, most women will begin to have mammograms at age 45, and Lenny will have hers...at age 24. I hate that idea. I hate the years of radiation that my misfortune has given her. I hate the worry she will have at a young age, when she should just be enjoying her youth. I hate the idea of them finding anything that would lead to treatment before she has had a chance to have a family, enjoy her youthful sexuality, or just live her damn life like everyone else.
So the bottom line is: women at high risk of breast cancer are not going to be denied screening tools because of these recommendations. (For more on this, see the Young Survival Coalition's response to the ACS recommendations).
Barring information about genetics, family history, or suspicious masses, no one really knows who is high risk.
Moreover, these screening tools are not the best line of defense for young women. More work needs to be done in that area.
I admit that I do not understand why ACS would recommend the end of clinical breast exams. That doesn't make sense to me. Such exams are not high risk, do not expose anyone to radiation...I suppose they might not be objective or entirely accurate, but they seem a hell of a lot better than nothing for very little cost and risk. My gyne confirmed my lumps through a CBE and won't allow me out of his sight without extensive breast exams. My oncologist does them too.
I think the uproar over these changing guidelines reflects the general misunderstanding about the usefulness of mammograms. Mammograms are touted as "prevention," as the "early detection" that will save your life. Mammograms prevent nothing. They are DETECTION tools. They can only tell you, possibly, if you already have cancer. They cannot predict your risk or the course your existing cancer will take. There are a lot of ways to detect breast cancer--CBEs being a big one.
But there is no test that can prevent your cancer from moving from early stage to late stage, or from being there in the first place. Breast cancer organizations such as Komen are partially responsible for this misinformation. Their focus is so clearly on "early detection" that it ignores facts such as the 34% of women with early stage TNBC whose cancer will metastacize NO MATTER WHAT THEY DO. The dark underbelly of Pinktober and breast cancer awareness campaigns is that people have been led to believe that mammograms save women's lives--when they weren't even designed to save women's lives.
That's what surgery, chemo, radiation, immunotherapy, hormone-blocking targeted drugs, and other solutions do.
But I don't know why I expect this to be any different than any of the other misinformation out there, like that bilateral mastectomies will help save your life or that more aggressive cancers (such as HER2+ or TNBC) require mastectomy for efficacy (genetic factors, in addition to size and invasiveness of tumors, are what matter for such surgery decisions, not tumor type) or that putting a smile on your face will prolong your life or that avoiding stress will stop cancer in its tracks. I mean, I was once profiled in HuffPo for having a lumpectomy (as if that was weird or something) and comments on the article included things such as "if she really loved her children, she wouldn't have worried so much about her breasts."
SCIENCE, PEOPLE. Also--what an asshole. Someone actually said that I didn't love my children because I didn't needlessly amputate body parts and because I chose a surgery and treatement plan that GAVE ME THE LOWEST RISK OF RECURRENCE.
But I digress. Here's something to chew on. I have had an extremely aggressive form of breast cancer two different times. And yet, here I am, at age 40--back to screening (fewer pictures and angles) mammograms as opposed to diagnostics. I am being treated like a woman with average risk of cancer (from the old guidelines) and I am a two time cancer patient. I see my oncologist every six months. The man still does an extensive CBE (I assume--I don't see him until November) but no other tests. I get no bloodwork, no scans, no tumor marker tests--nothing. This has always been the case. The reason is that these tests are notoriously inaccurate and prone to false positives. As my oncologist says "if we look for something, we will find something, and then we have to treat you." I should note that my oncologist is one of the top breast oncs in the world, and he helps make the recommendations that are used for treatment at the national level--he is not a crackpot by any means. So, when my full body scan in 2013 showed nodules in my lungs, they did nothing. Because EVERYONE IN THE MIDWEST has nodules in their lungs from pollution. Barring other symptoms, there's nothing to do. He doesn't do these tests because the guidelines are against it, they cause needless worry and stress, and for this reason:
There's not a damn thing anyone can do to turn back the clock on metastatic breast cancer today.
This is not Lance Armstrong's stage 4 testicular cancer, folks. No one is getting cured. Once breast cancer has spread to a distant part of the body, no test or screening in the world will enable the person getting that news to ever not be a person with breast cancer--EVER--for the rest of her life.
That is the part that needs to change. Perhaps less of a focus on mammograms will free up resources to actually search for a cure.
The short story is that ACS has raised the recommended age for first mammograms from 40 to 45 for women with average breast cancer risk (emphasis mine). At age 55, such women can move from annual mammograms to mammograms every two years. ACS has said that women aged 40-44 should be offered mammograms if they ask (I honestly do not understand how that would work with current insurance company rules).
A lot of people are up in arms about these new recommendations, especially women with breast cancer that was diagnosed prior to age 40. It is an understandable reaction.
I just don't agree with it.
Not that anyone asked me, but I agree with the ACS recommendations on mammograms (I don't agree with the recommendations for clinical breast exams--more on that later). Women with no family history or high risk for breast cancer have never been offered mammograms before age 40 as a matter of course. There are exceptions, of course. However, most of us who were diagnosed before age 40 found the cancer ourselves. We felt a lump or noticed a change in the skin or nipple or realized something was wrong. I found my cancer both times. I had a clean mammogram in May of 2013, and a little more than a month later I found the lump that would lead to my second diagnosis in July 2013. In fact, when the radiologist was attempting to confirm my cancer, she could not find the tumor using mammography--even though she had placed a metal clip inside my breast at the tumor site and was specifically looking for it.
There are a few lessons here that are not just me talking about my experience and expecting it to apply to other women.
One lesson is that ACS is absolutely NOT saying that women who find suspicious masses, confirmed by a doctor, will be denied mammograms if they are under age 40. The fact is that most mammograms offered to young women are done to confirm what is already suspected, not to diagnose cancer that was undetected. There are exceptions--I know that. For example, women who are BRCA positive would be considered exceptions, I would assume, as would women with strong family history of breast cancer. But the new guidelines are for women with NORMAL RISK of breast cancer. And no one is suggesting that mammography would not be used to diagnose women like me--I was a woman with no high risk of breast cancer for the first 34 years of her life. I was years away from my first scheduled mammogram. But when suspicions arose, I underwent a battery of tests, including mammography. ACS is not suggesting a different course of action.
Another lesson is that mammograms are simply poor screening tools for young women. They do not work well for us, and this is a big part of the reason for the change in policy. They do not work well for anyone with dense breast tissue. They carry risks and have high rates of false positives (or, in my case--false negatives). Ultrasound was much more effective for me, both times. I was not even offered a mammogram the first time, as I was still nursing and the radiation would prove harmful to the baby. Once the ultrasound showed three perfect round tumors, however, I did go into mammography. Hell, they gave me a little of everything: 3d mammogram, ultrasound, regular mammo...
Finally, women with high risk of breast cancer have entirely different recommendations. My daughter is considered high risk, because of me. The current recommendation is that she should begin to have mammograms when she is ten years younger than I was at diagnosis. So, most women will begin to have mammograms at age 45, and Lenny will have hers...at age 24. I hate that idea. I hate the years of radiation that my misfortune has given her. I hate the worry she will have at a young age, when she should just be enjoying her youth. I hate the idea of them finding anything that would lead to treatment before she has had a chance to have a family, enjoy her youthful sexuality, or just live her damn life like everyone else.
So the bottom line is: women at high risk of breast cancer are not going to be denied screening tools because of these recommendations. (For more on this, see the Young Survival Coalition's response to the ACS recommendations).
Barring information about genetics, family history, or suspicious masses, no one really knows who is high risk.
Moreover, these screening tools are not the best line of defense for young women. More work needs to be done in that area.
I admit that I do not understand why ACS would recommend the end of clinical breast exams. That doesn't make sense to me. Such exams are not high risk, do not expose anyone to radiation...I suppose they might not be objective or entirely accurate, but they seem a hell of a lot better than nothing for very little cost and risk. My gyne confirmed my lumps through a CBE and won't allow me out of his sight without extensive breast exams. My oncologist does them too.
I think the uproar over these changing guidelines reflects the general misunderstanding about the usefulness of mammograms. Mammograms are touted as "prevention," as the "early detection" that will save your life. Mammograms prevent nothing. They are DETECTION tools. They can only tell you, possibly, if you already have cancer. They cannot predict your risk or the course your existing cancer will take. There are a lot of ways to detect breast cancer--CBEs being a big one.
But there is no test that can prevent your cancer from moving from early stage to late stage, or from being there in the first place. Breast cancer organizations such as Komen are partially responsible for this misinformation. Their focus is so clearly on "early detection" that it ignores facts such as the 34% of women with early stage TNBC whose cancer will metastacize NO MATTER WHAT THEY DO. The dark underbelly of Pinktober and breast cancer awareness campaigns is that people have been led to believe that mammograms save women's lives--when they weren't even designed to save women's lives.
That's what surgery, chemo, radiation, immunotherapy, hormone-blocking targeted drugs, and other solutions do.
But I don't know why I expect this to be any different than any of the other misinformation out there, like that bilateral mastectomies will help save your life or that more aggressive cancers (such as HER2+ or TNBC) require mastectomy for efficacy (genetic factors, in addition to size and invasiveness of tumors, are what matter for such surgery decisions, not tumor type) or that putting a smile on your face will prolong your life or that avoiding stress will stop cancer in its tracks. I mean, I was once profiled in HuffPo for having a lumpectomy (as if that was weird or something) and comments on the article included things such as "if she really loved her children, she wouldn't have worried so much about her breasts."
SCIENCE, PEOPLE. Also--what an asshole. Someone actually said that I didn't love my children because I didn't needlessly amputate body parts and because I chose a surgery and treatement plan that GAVE ME THE LOWEST RISK OF RECURRENCE.
But I digress. Here's something to chew on. I have had an extremely aggressive form of breast cancer two different times. And yet, here I am, at age 40--back to screening (fewer pictures and angles) mammograms as opposed to diagnostics. I am being treated like a woman with average risk of cancer (from the old guidelines) and I am a two time cancer patient. I see my oncologist every six months. The man still does an extensive CBE (I assume--I don't see him until November) but no other tests. I get no bloodwork, no scans, no tumor marker tests--nothing. This has always been the case. The reason is that these tests are notoriously inaccurate and prone to false positives. As my oncologist says "if we look for something, we will find something, and then we have to treat you." I should note that my oncologist is one of the top breast oncs in the world, and he helps make the recommendations that are used for treatment at the national level--he is not a crackpot by any means. So, when my full body scan in 2013 showed nodules in my lungs, they did nothing. Because EVERYONE IN THE MIDWEST has nodules in their lungs from pollution. Barring other symptoms, there's nothing to do. He doesn't do these tests because the guidelines are against it, they cause needless worry and stress, and for this reason:
There's not a damn thing anyone can do to turn back the clock on metastatic breast cancer today.
This is not Lance Armstrong's stage 4 testicular cancer, folks. No one is getting cured. Once breast cancer has spread to a distant part of the body, no test or screening in the world will enable the person getting that news to ever not be a person with breast cancer--EVER--for the rest of her life.
That is the part that needs to change. Perhaps less of a focus on mammograms will free up resources to actually search for a cure.
Sunday, October 11, 2015
Day 1, 855: Flipping the Script
I've flipped the script on October 11.
Thirty one October 11ths ago was a burnt sienna Crayola day of anticipation and near death. It was the defining day of my childhood; my body bears the trauma of that day still. There is no one who knew me then who doesn't remember.
Last October 11th was the day I would have dreamed of thirty years prior if I had been old enough to imagine my adult life with any accuracy. An idea for an alternative to an end-of-chemo celebration exploded into something else entirely as we celebrated ten years of marriage. Ten years before, we had walked together, down a hallway in a community development corporation, wearing a funeral suit and a brown dress. This time he waited for me in his tux at the bottom of the hill we own, somehow, ourselves, and my brother escorted me down our driveway while leaves fell on my white vneck gown, half of my post-mastectomy sternum drawn down to skin and bone. Two children waited with my husband; somehow, they were ours too, and yet they were so much themselves, as they have always been.
I took one of the only meaningful anniversaries in my life and turned it into something else. It took me thirty years, but I did it.
October is supposed to mean something specific for women like me. I choose not to acknowledge that, however. I recognize absolutely nothing of myself or my experience in this earth toned month that so many are trying to dye pink. I just have too many other things to think of in October.
One of the hazards of writing is the tendency to write about the seemingly big things. But everything big is just the hope or loss of a thousand little things. October 11 is neither the day I almost died or the day I celebrated the surprise of my continued life with my family and friends. It's a day that rolls around every year, in the middle of the most beautiful and fickle month of our midwestern calendar.
October 11 is this: the last day of eighty degrees for who knows how long, a day so perfect you miss it while it's here. And on a picturesque street of mansions in a strangely bucolic neighborhood of a violent and corrupt city, a smallish woman looks over her shoulder as she trespasses on lawns, kicking leaves and crunching them loudly under her faded maroon Doc Martens. Some teenage boys driving by yell at her and she doesn't know or care why or what they are saying because she will continue kicking her long legs in the air because she can, she can, she can.
October 11 is this: that same woman texting her husband in embarrassment and amazement, to find out how to unlock the gas cap on her own car. In a year and a half of owning the only new car she has ever had, her husband has filled the tank every single time. She doesn't know how this has happened, any more than she understands why her husband has to text her ten times from the grocery store. But who is she kidding? She knows what this means, and it isn't anything to do with men and women and the roles they play or rebel against. The text she sends makes them both laugh but its meaning hits her hard: this is what happens when two people live one life. Little things fall to the other and you don't even notice. She suddenly sees grief everywhere, as she always has done, grief in the gas fumes of the future when she doesn't text anyone, grief in the produce aisle when he shops from a list he has written himself.
October 11 is this: two children walking to the park alone, playing games they communicate in a secret language, never to know if their seemingly misplaced closeness is natural or an outcome of the fear and adult knowing they've weathered together years before life should have handed them those lessons.
Today, the house and yard are quiet but everyone is nearby. A woman drops a football in the lawn a man has just mowed. The trees can't decide between green and orange. The air is warmer than it was in early July. Right now, on this day, cells and legs cooperate, hearts beat as they should and the air feels delicious as we breathe it in effortlessly, miraculously, on another October 11 we are all somehow here to witness, together, again.
Monday, September 28, 2015
Day 1,842: SuperMoon Eclipse
Do you remember when we watched the SuperMoon Eclipse? It was 18 years ago, and you were so small. You were six and nine. The notion of an eclipse had been changed since my youth by social media, by cellphone cameras, by pollution. We were so aware of its coming, and how long it would be until it came again. The day dawned warm and gray and cloudy. Your father cursed the saints, believing that this time, like all the other times, his fascination with space would be temporarily obfuscated by overcast skies. We didn't prepare. We had no cameras, no spot scouted out in advance. We assumed we wouldn't be able to see it. We decided to let you stay up late, at least past 9, just in case. And then the thing that never happens happened. The clouds broke, the moon was perfectly cushioned between the shadows of tree branches in our yard. You were wearing your pajamas; footie pjs and pants and nightgown and bathrobe all together. We set chairs out in the yard, on the hill, by the hostas, in the midst of a plague of mosquitoes. Our neighbors, the youngest of whom was practically grown, were watching too. You wanted to join them and I said no. We watched as a family. It only took an hour. The moon was so bright, then it got slimmer and slimmer, until it was nothing but a line of white surrounded by orange, and then was nothing but a ball of red, and we saw the whole thing happen, perfectly, as if our house was made for moonwatching. You were tired and bug bitten. You asked how craters are formed on the moon. You asked about asteroids and if there was water in space and what would happen if the moon exploded or disappeared. Your father told you people used to think an eclipse was a monster rather than a shadow, that people believed that real and terrible things lived in the sky. You said that you loved our house because you could always see the moon. You asked all sorts of questions, and we answered you, except that last question, when you asked if we would be alive when this happened again, in 18 years, when you would be 24 and 27 and we would be newly 58. We told you we hoped so, but you never know, so we should enjoy this. We told you that if we were all alive at that time, you would remember this night. I said it was hard to imagine, but then I did it anyway. I imagined, and I wrote it down for you, what I hoped I would be able to say to you during the next SuperMoon Eclipse.
Thursday, September 17, 2015
Day 1,831: Nerves
I've been nervous. Anxious, I guess you could say. I've had trouble sleeping. A lot is going on in our family. New jobs, schools, multiple houses to take care of, the regular crazy full time work and full time mom balance that for me has been exacerbated by the full time cancer situation for the last five years.
Cancer actually could be a full time job when you're in active treatment. For me, it wasn't, in that I didn't take time off, hardly at all. I did take a leave during radiation at the end of 2010, mostly because our HR policies were not equipped to deal with my double daily commute. It's a long story, but yeah, I only took time off during the EASIEST time of my treatment. I had two major surgeries in 2010, and took off a total of three days, I believe. I couldn't move my left arm and I sat there typing an article with one hand. I started a new job right after my second diagnosis. I can no longer relate to the normal conversations related to work-life balance, because my situation became a little absurd at some point. Doing all that runaround...and chemo. Having chemo-induced menopause, hot flashes every five minutes, and an infant...at the same time. Making family planning decisions based on cancer and the odds of me staying alive. Stopping nursing because of cancer. My son not sleeping for months and acting like he was possessed by the devil because he thought I would die.
But that doesn't really get to what makes cancer difficult.
The scheduling is rough, the treatment is punishing, the surgery requires a long recovery, and there are side effects that last years. You lose friends and become isolated, no matter how hard you try to be "normal." You lose body parts; you face amputations and physical therapy. Your hormones go insane, and no, it's not just a life change, it's POISON doing that. You experience role reversals in your family. You grieve just looking at your children. People fear you or treat you differently.
Still, that's not what's tough. I am tough, I know that. I can handle pain and suffering. I'm good at it, whether I like it or not. What's hard is the fear, the worry, the anxiety. It's hard even for someone like me, who absorbs it in relative stride. I don't panic, or cry, I haven't dealt with major depression (though I have dealt with depression) or addiction. Many cancer patients have these problems, and you will never see me blaming them. The culture that surrounds how people are "supposed" to feel about cancer is so far off the mark it's absurd. Cancer is horrible and terrifying. It's also very common, and it will impact just about every single person directly or indirectly in their lives. So why create a false narrative? I don't understand why we have tried to dupe ourselves into believing it's a party or a chance for a new outlook on life or a journey or a chance to prove our moxie. We have a range of emotions for a reason. If our so-called negative emotions, such as fear, sadness, anger, and even helplessness cannot be tapped with something like cancer, why do we have them? I actually think they serve to protect us and remind us that there is a difference between the good and bad things that happen in life. They lead us to emotions that CAN help us greatly as we struggle. Anger, for example, can be extremely useful when dealing with a chronic medical condition. I get pissed off easily, but I also cannot be talked into anything. I am cynical, so I'm not wired to trust what doctors tell me right off the bat. I will yell to be heard. I have benefited greatly from that, in tangible, physical ways.
Regardless, cancer is nerve-wracking. Every headache, every pain that doesn't go away in a few days, every menstrual cycle that's off, could be a sign that you are dying if you have had cancer. I don't think of it that way in my every day life, because I have to get through my every day life. And please don't tell me it's negative thinking. It's not--it's the truth. Most of the time, the aches and pains of life are just that. But for a third of women originally diagnosed with early stage breast cancer, they represent more than that--they represent mets. The only thing that separates those women from me is time, or luck, or, possibly--nothing. I don't get to be normal. It's not my choice. I wish it were. I don't get to be a 40 year old woman with normal 40 year old woman problems. I understand that you might have "mom brain" or "40 brain" and so might I, but the truth is the poison wrecked my brain and I'm just getting it back. If you feel a lump, it is probably a cyst. That's how I used to think, back at 33. Since 34 I've known that for me? It's probably cancer. I know that cancer comes back, and my attitude doesn't change that. Cancer came back. It could come back again. I live with that every day, and I do it well, and with little complaining (at least about cancer), I just keep going, as almost everyone does. I don't self-medicate, but I don't judge people who do, not anymore. I think you have to do what you have to do as long as you're not endangering yourself or others. It's a hard thing to live with, when you're young, and life has turned out so different than you expected.
But here's what bothers me the most. We are often judged for being nervous. People with cancer are constantly told that, despite the completely logical reasons for our stress, we should not be stressed, anxious or nervous. Because if we are, cancer will get us! We are told that we have cancer BECAUSE we are stressed. I always argue, no, I am stressed BECAUSE I have cancer. I know women who feel they have cancer because they got divorced. Hell, then cancer is coming for half of you all before age 50. It doesn't HELP to feel stressed during cancer, or after, but the added guilt of being told that we are urging our cancer back just by trying to deal with the extreme complications of our lives is unnecessary and unhelpful.
If I say I am nervous, or not sleeping, believe me I know "it's not good for me." It's not good for you, either. It makes the day to day hard. It stresses your relationships. But it doesn't make cancer our fault. This post is not that deep. I just implore you, if you've ever felt anxious, or nervous, or stressed, or overwhelmed by life, imagine having cancer and a one in three chance of death in the next few years sentence added to that. And then, when you see someone who has or has had cancer living out her life with all of its complexity and continuing to put one foot in front of the other, pat her on the back, or offer her a coffee. Realize what it took to just seem overwhelmed like anyone else.
Cancer actually could be a full time job when you're in active treatment. For me, it wasn't, in that I didn't take time off, hardly at all. I did take a leave during radiation at the end of 2010, mostly because our HR policies were not equipped to deal with my double daily commute. It's a long story, but yeah, I only took time off during the EASIEST time of my treatment. I had two major surgeries in 2010, and took off a total of three days, I believe. I couldn't move my left arm and I sat there typing an article with one hand. I started a new job right after my second diagnosis. I can no longer relate to the normal conversations related to work-life balance, because my situation became a little absurd at some point. Doing all that runaround...and chemo. Having chemo-induced menopause, hot flashes every five minutes, and an infant...at the same time. Making family planning decisions based on cancer and the odds of me staying alive. Stopping nursing because of cancer. My son not sleeping for months and acting like he was possessed by the devil because he thought I would die.
But that doesn't really get to what makes cancer difficult.
The scheduling is rough, the treatment is punishing, the surgery requires a long recovery, and there are side effects that last years. You lose friends and become isolated, no matter how hard you try to be "normal." You lose body parts; you face amputations and physical therapy. Your hormones go insane, and no, it's not just a life change, it's POISON doing that. You experience role reversals in your family. You grieve just looking at your children. People fear you or treat you differently.
Still, that's not what's tough. I am tough, I know that. I can handle pain and suffering. I'm good at it, whether I like it or not. What's hard is the fear, the worry, the anxiety. It's hard even for someone like me, who absorbs it in relative stride. I don't panic, or cry, I haven't dealt with major depression (though I have dealt with depression) or addiction. Many cancer patients have these problems, and you will never see me blaming them. The culture that surrounds how people are "supposed" to feel about cancer is so far off the mark it's absurd. Cancer is horrible and terrifying. It's also very common, and it will impact just about every single person directly or indirectly in their lives. So why create a false narrative? I don't understand why we have tried to dupe ourselves into believing it's a party or a chance for a new outlook on life or a journey or a chance to prove our moxie. We have a range of emotions for a reason. If our so-called negative emotions, such as fear, sadness, anger, and even helplessness cannot be tapped with something like cancer, why do we have them? I actually think they serve to protect us and remind us that there is a difference between the good and bad things that happen in life. They lead us to emotions that CAN help us greatly as we struggle. Anger, for example, can be extremely useful when dealing with a chronic medical condition. I get pissed off easily, but I also cannot be talked into anything. I am cynical, so I'm not wired to trust what doctors tell me right off the bat. I will yell to be heard. I have benefited greatly from that, in tangible, physical ways.
Regardless, cancer is nerve-wracking. Every headache, every pain that doesn't go away in a few days, every menstrual cycle that's off, could be a sign that you are dying if you have had cancer. I don't think of it that way in my every day life, because I have to get through my every day life. And please don't tell me it's negative thinking. It's not--it's the truth. Most of the time, the aches and pains of life are just that. But for a third of women originally diagnosed with early stage breast cancer, they represent more than that--they represent mets. The only thing that separates those women from me is time, or luck, or, possibly--nothing. I don't get to be normal. It's not my choice. I wish it were. I don't get to be a 40 year old woman with normal 40 year old woman problems. I understand that you might have "mom brain" or "40 brain" and so might I, but the truth is the poison wrecked my brain and I'm just getting it back. If you feel a lump, it is probably a cyst. That's how I used to think, back at 33. Since 34 I've known that for me? It's probably cancer. I know that cancer comes back, and my attitude doesn't change that. Cancer came back. It could come back again. I live with that every day, and I do it well, and with little complaining (at least about cancer), I just keep going, as almost everyone does. I don't self-medicate, but I don't judge people who do, not anymore. I think you have to do what you have to do as long as you're not endangering yourself or others. It's a hard thing to live with, when you're young, and life has turned out so different than you expected.
But here's what bothers me the most. We are often judged for being nervous. People with cancer are constantly told that, despite the completely logical reasons for our stress, we should not be stressed, anxious or nervous. Because if we are, cancer will get us! We are told that we have cancer BECAUSE we are stressed. I always argue, no, I am stressed BECAUSE I have cancer. I know women who feel they have cancer because they got divorced. Hell, then cancer is coming for half of you all before age 50. It doesn't HELP to feel stressed during cancer, or after, but the added guilt of being told that we are urging our cancer back just by trying to deal with the extreme complications of our lives is unnecessary and unhelpful.
If I say I am nervous, or not sleeping, believe me I know "it's not good for me." It's not good for you, either. It makes the day to day hard. It stresses your relationships. But it doesn't make cancer our fault. This post is not that deep. I just implore you, if you've ever felt anxious, or nervous, or stressed, or overwhelmed by life, imagine having cancer and a one in three chance of death in the next few years sentence added to that. And then, when you see someone who has or has had cancer living out her life with all of its complexity and continuing to put one foot in front of the other, pat her on the back, or offer her a coffee. Realize what it took to just seem overwhelmed like anyone else.
Wednesday, August 26, 2015
Day 1,809: Writing Lesson
I've just finished reading a book of essays on women and their friendships: She Matters by Susanna Sonnenberg. I love that I can read again, that when I have time I can tear through books one after another as I used to do, before chemobrain temporarily took that from me. But sometimes I wonder if too much life has transpired; I have trouble relating to anything. I kept wanting to see myself in these stories, to gain some kind of understanding, but it was like I was reading a foreign language. I could not separate the stories from the scenes that made them possible: boarding school; communities of artists; Montana; lines of coke on a coffee table in Manhattan. And then, I could not focus on the descriptions of the friendships when I was trying to understand how other things came to pass: an affair with a 34 year old teacher that began at 16 (didn't I learn to ditch school to avoid that very thing?); screwing your good friend's ex-husband; telling a friend who has had trouble adjusting to parenthood "yes you are a bad mother;" being so needy and impossibly intense in friendships; crashing and burning through one woman after another, all the time; resenting a friend for not visiting within two weeks after your baby is born (I just saw a friend who had never met my six year old son, though we live in the same city. I feel no resentment at all); telling a reserved and embarrassed friend about your sexual adventures in detail (why would anyone do this?); sleeping with a female friend out of boredom in France.
I was looking for something else, some way of describing friendship that made sense to me. I was looking for someone to play cards, to tell stupid jokes or make mix tapes or pancakes. Didn't anyone play sports together or drive around aimlessly in cars? What about book club? I've thought a lot about friendship over the last five years, and what it means and how it ends; what people can give and what they can't, and when and why you choose to care. I've thought a lot about how we forgive each other our trespasses. But I haven't really written much about it here. I guess I'm glad I still have some friends left. This cancer, and more than anything, this blog, has created a rift between me and many people. It's hard to reconcile the person I am in everyday life, the goofy vaguely pissed off person who talks loudly with her hands, with this.
And so I read this book and I didn't relate to it, but it got me thinking about friendship. And so because I have time as I sit in the woods in weather more conducive to November than August, I decided to write something about how writing about friendship is different than friendship. It was the only thing I could think to say, and this is where I say things.
Writing Lesson
For Amy Ishmael
By Katy Jacob
When I was eight, I wrote a story
about what friendship was like at six.
No, that’s not quite right.
I wrote about how it might have been
if we had been friends at ten, or twelve,
how I imagined it would be in that impossible future.
I wrote a story about worlds
when mine was stiflingly small.
The Philippines was another world
and she was going to it.
No one’s parents promised to keep us in touch.
No one wrote letters.
There was one last visit at her house,
but that memory is a cloud.
We both disappeared.
I had romantic thoughts even then,
of finding her someday, of coincidences.
When I was seven, I could no longer picture her face.
I wrote a story that had little to do with either of us.
My story won an award.
I met people, politicians.
I was asked to read to them.
I was supposed to know what to say.
I could not explain that writing that story
was easier than forgetting
or admitting I’d already forgotten.
My details were praised, but what I described
would never come to pass.
I was learning that if you can give a name to grief
and a space to memory, you will be praised.
I was learning that the notion
that nine months in the life of a child held importance
could bring tears to the eyes of adults who hadn’t realized.
I was supposed to be proud.
The world was a lie though, even then.
How could I explain?
I thought somehow she would know,
that the praise I received for remembering her
would mean she remembered me too.
I had written a story.
I titled it, simply, “Amy.” It won an award.
And now I am confessing to you.
What is important to me now
was important to me then.
I’ve just turned forty.
I can finally admit that I’ve never gotten over it.
I can confess to you that I still mourn its absence,
the absence of the story,
the one titled, simply, “Katy.”
I grieve the story that was never written
by a girl in another world
when we were eight years old,
remembering being six.
I was looking for something else, some way of describing friendship that made sense to me. I was looking for someone to play cards, to tell stupid jokes or make mix tapes or pancakes. Didn't anyone play sports together or drive around aimlessly in cars? What about book club? I've thought a lot about friendship over the last five years, and what it means and how it ends; what people can give and what they can't, and when and why you choose to care. I've thought a lot about how we forgive each other our trespasses. But I haven't really written much about it here. I guess I'm glad I still have some friends left. This cancer, and more than anything, this blog, has created a rift between me and many people. It's hard to reconcile the person I am in everyday life, the goofy vaguely pissed off person who talks loudly with her hands, with this.
And so I read this book and I didn't relate to it, but it got me thinking about friendship. And so because I have time as I sit in the woods in weather more conducive to November than August, I decided to write something about how writing about friendship is different than friendship. It was the only thing I could think to say, and this is where I say things.
Writing Lesson
For Amy Ishmael
By Katy Jacob
When I was eight, I wrote a story
about what friendship was like at six.
No, that’s not quite right.
I wrote about how it might have been
if we had been friends at ten, or twelve,
how I imagined it would be in that impossible future.
I wrote a story about worlds
when mine was stiflingly small.
The Philippines was another world
and she was going to it.
No one’s parents promised to keep us in touch.
No one wrote letters.
There was one last visit at her house,
but that memory is a cloud.
We both disappeared.
I had romantic thoughts even then,
of finding her someday, of coincidences.
When I was seven, I could no longer picture her face.
I wrote a story that had little to do with either of us.
My story won an award.
I met people, politicians.
I was asked to read to them.
I was supposed to know what to say.
I could not explain that writing that story
was easier than forgetting
or admitting I’d already forgotten.
My details were praised, but what I described
would never come to pass.
I was learning that if you can give a name to grief
and a space to memory, you will be praised.
I was learning that the notion
that nine months in the life of a child held importance
could bring tears to the eyes of adults who hadn’t realized.
I was supposed to be proud.
The world was a lie though, even then.
How could I explain?
I thought somehow she would know,
that the praise I received for remembering her
would mean she remembered me too.
I had written a story.
I titled it, simply, “Amy.” It won an award.
And now I am confessing to you.
What is important to me now
was important to me then.
I’ve just turned forty.
I can finally admit that I’ve never gotten over it.
I can confess to you that I still mourn its absence,
the absence of the story,
the one titled, simply, “Katy.”
I grieve the story that was never written
by a girl in another world
when we were eight years old,
remembering being six.
Saturday, August 22, 2015
Day 1,805: KatyDid 40
When I was four years old, a little girl my age tried to drown me at the pool.
I thought of this recently, suddenly, this memory that I've always had but have called upon rarely. I thought of it when an older child stole something from my kids at the pool and preceded to lie about it while flaunting the stolen goods. The story just came out of my mouth:
People do bad things for no reason at all. They are capable of telling lies that are obvious lies without feeling an ounce of remorse. When I was four, I was playing in the kiddie pool with a toy I had brought from home: a tub filled with three bowling-pin-shaped men: a butcher, a baker, a candle-stick maker. My mother was a few feet away. A little girl came up to me and said: "That's mine. Give it to me." It was absurd. Of course it wasn't hers. I had brought it from my bathtub at home. I said, no, it's mine, and ignored her. She tried to snatch it away from me. The look on her face was full of fury, real, primal anger. Since we were in the kiddie pool, she could not have been more than five. I held fast to the tub. She was furious. She grabbed my head with both hands and pushed, and then held my face under water until I couldn't breathe. I fought her off and ran to my mother.
I stopped there once I recognized the silence that surrounded me in the car. This story was much more disturbing than the situation warranted. I thought back and realized that at the time, I told my mother the girl had tried to steal my toy, but I did not tell her she had tried to drown me. Maybe I didn't even really understand what had happened. Maybe I understood and had trouble believing it. Maybe I thought I would be deemed the liar instead. Maybe it was too hard to think about at four.
In truth, it would have been difficult for the little girl to succeed in her plot. Adults were everywhere, my mother was close, the water was very shallow. It's the stuff of movies, one little girl killing another over a worthless toy. It doesn't happen (that's what everyone says about everything terrible--it doesn't happen, but it does). But what I understood even then, and filed at the back of my mind, was that she absolutely wanted to drown me, that her intention was to get rid of me so that she could take a $5 toy that did not belong to her. She wanted me to disappear.
My mother didn't know that part of the story until a week ago. My husband had never heard the story at all. I never thought much of it: "Kids can be cruel." My husband looked at me: "Jesus. No wonder you've never trusted anyone." Huh, I thought. I always assumed I never trusted anyone for all of the other reasons, because of all of the other things that have happened.
Maybe he's right; who knows. In a way, it doesn't matter. What matters is that the knowledge of death has always been there for me, the fleetingness of life, other people's lack of concern for its meaning. It was there at four, and again at nine when I almost died in a car accident, it's been there all the time, again and again when death started calling my name and then abruptly changed its mind. Cancer did not give me knowledge of mortality or life's fragility. Cancer did not make me think of the worst case scenario in every pedestrian situation. I've always known it: I could be dead, always, people I love could die or be dying. That is always there, it is always true.
I've never really seen myself as someone who would get old. As a child, I used to imagine myself as a grown-up, but I was always about 35 in those daydreams. This is not because of vanity. What would an old Katy Jacob be like? Does a person like me make it that far?
I've been trying for 40 since 34. It seemed so far away then, when I found this aggressive cancer. It seemed far away again when I found it again at 37. Everyone around me seems to either be resigned to 40 or attempting to stop it from happening. People ask "can you believe it?" And I honestly say no, but my answer doesn't mean what they think it means. It doesn't mean "I can't believe I'm 40 when I still feel 16!" It means, well shit. I can't believe it. I'm still here.
Have I done anything of significance in these 40 years? That seems to be the question of the hour. People my age are searching: for youth, lost dreams, a singular purpose, hair, a legacy, sex, peace, recognition, the firmness of their place in the world. I'm not searching at all. I've lost or given up many of the things people associated with me. I've kept many other things, and I've remained myself in the balance. I don't feel lessened and I don't feel exalted by this life.
People think of 40 as the halfway mark. I've never understood that. Four could be the halfway mark; it could be the end. There's no way to know. It's true that at some point, you stop feeling any different than yourself. For me, that happened around 15 or 16. I felt grown then, and I wasn't wrong. I was grown. I'm the same now, though life has happened since then. I might have gained some wisdom, but most of the wisdom I've gained has been in realizing I didn't have to carry my burdens myself. The burdens were always there; I just thought it was useless or damaging to mention them to anyone else.
Augie asked me on his sixth birthday if being dead felt the same as being six, and I wish I'd thought it an odd question to ask while walking to kindergarten. Lenny told me last night that she had a dream that she and Augie were stuck in the attic and he told her they couldn't leave because they were dead. What could I say? The attic is a fun space for you. You are safe in this house. Everyone dies, but hopefully after having the opportunity to live a long life and see those who are older than them go first. Go back to sleep.
Go ahead, I wanted to say. Burden me with your fear of death. I can take it.
I wish I'd known that at 4, at 9, at 16, I wish I'd known that I could share the burden. If I could go back, I would tell myself so many things. But after reminding myself not to take myself too seriously, I would first say this: life would not necessarily get any easier, but it also would not necessarily get any harder. Life was always easy and hard. However, at some point, you can admit to how life is. You can be as you always have been, without having to hide it: you can put your pathos and humor on full display. You can talk about suffering and fear as casually as you talk about breakfast, without worrying what other people think. You can admit to being unable to cry, and not feel damaged. You can accept how other people are, not because it's right, not because you like it, but because it's not your place to think they should be different.
I know that a missive on death is not what I should write on this day I have been waiting for for more than five years. But, you all know I don't do things the way I am supposed to; it's part of what makes me who I am. Believe me, I am happy to be 40. I am happy to be able to see myself today the way I could not see myself more than five years ago, or thirty years ago, when 40 seemed a dream. I'm content with my sameness, with the ways I have changed and especially the ways that I haven't. I have always held the mundane and the absurd and the tragic and the beautiful in close quarters. Just the other day I sat half in the sun and half in the shade snapping beans for dinner while my children screamed with joy and mischief and my husband sang to himself and I contemplated the Armenian genocide and that is just how I am.
Forty, today I am forty! So many never made it this far. And all those who have know that it is not enough. Forty is not enough years, no matter how selfish we are for feeling that way. And so if I am to be honest, I will end with this: When I was a child, my mother called me Kat. I hated that nickname. I refused to respond to it. But perhaps there was something in it. I think back to being 4, 9, 24, 34, 37 and all the surrounding ages; I think about drowning, a terrible car accident, a gun at my head, an aggressive form of cancer, an aggressive form of cancer again, and all the surrounding joy and pain; and I am honest and selfish enough to acknowledge this: Yes, maybe that's right. Maybe that's what I am: A Kat. If that is to be the case, would that the four lives I have left turn out to be half as interesting as the first five have been. Here's to another 40, or however long that takes.
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