Friday, December 25, 2015

Day 1,930: The Sixth Christmas

Last night, we put our restless children to sleep, barely two days after our daughter asked us to tell her the truth about Santa Claus, because she would need to know when she was older. Some people believe it is wrong to tell children stories that supposedly aren't true, or at least people sometimes feel that way about certain types of stories, and not others. I figure that I am, and have been, the age that she refers to: I am 40, and I have been 30, and even 15, and Santa came to me then as well. And so I told her that she knew the truth already, and that Santa would come again. She believed me, because she wants to believe, not just me, but everything. And so last night we put them to bed after telling them that we had been together, as a couple, for 13 Christmases, that Lenny was experiencing her 10th Christmas, and Augie his 7th. Augie had been constantly moving for not just hours but seemingly days, driving us all crazy, but seemed eager to go to sleep. Lenny could not fall asleep, and came into our room at about 10:30, crying that she would never sleep, and then Santa would never come.

Her father carried her back to bed like she was a baby. She is almost ten years old, and she weighs 50 pounds. People talk about how it won't be long until you won't be able to do that. But I probably weighed 90 pounds when I learned how to drive. When Gabe and I started dating, he used to carry me places. It was like something out of movie, when people proposed illogical and intimate things to each other. Gabe would ask, Can I carry you? And I would say, um, why? There was never a reason. He would carry me to the car, or the door of my apartment, or up the stairs. He still offers, albeit rarely. Most of the time, I am busy doing something else.

And so they slept, and they awoke, and we had Christmas morning. I remember some things about their previous Christmases, but the memories are already a blur. When Lenny was nine months old she got a doll for Christmas that she named Dolly, because even then, she could talk, to a point. Her daycare providers told us they had never seen a child so young so attached to anything before--she treated her as if she were a real baby. One night, when she was one, Lenny woke up sobbing, inconsolable. She tried to say what was wrong but couldn't--she was one, after all, and she was so upset she couldn't speak. We finally realized she had left Dolly at daycare, and was crying the way a mother might cry when she cannot find her child in the grocery store. We told her that Dolly was fine and eventually she went back to sleep. At six AM, Gabe rode his bike to the daycare and rescued Dolly so she was there before Lenny woke up. It's not so much Lenny receiving Dolly during the Christmas of 2006 that I remember, as it is the time when she forgot her. That is what I remember.

I don't remember Augie's Christmas when he was one. How terrible is that? It's true. I was two weeks out of eight continuous months of cancer surgery and treatment. I just don't remember. Two years ago, I was six days past an emergency D&C necessitated by almost two weeks of very excessive bleeding caused by chemo destroying my hormones. I don't remember the specifics of that Christmas, or of last year, when I was healthy, as I am today. What I do remember of Augie and Christmas is the way he has spun it for all of us, as he dances constantly and explains that Santa is able to deliver all the presents because he uses his magic to stop time. I will remember him writing "P.S. Don't forget the stockings!" on the note to Santa this year. I don't know that there are any specific "aha!" moments of him, or his sister, exuberant under the tree, that I will remember, however. I only remember two of my own: when my brother gave me his Bad News Bears stuffed animal that I loved, and I kissed him, and he let me. And when I received my knockoff Cabbage Patch doll, whom I named Sarah, and declared to my mother was six years old, because I didn't like baby dolls and I wanted to be able to go to work. It's not that I remember opening those presents, necessarily. Or that I remember what happened next. What I remember are the stories, because I have heard them so many times.

Christmas blurs together for me. It is all anticipation, and chaos, and me cooking the same dishes for breakfast every year. It is reading our new books after everyone leaves. Christmas is me taking a bath and taking a walk and not seeing the kids for the rest of the day because they are in the attic with their new toys. Christmas Eve is dinner at my mother's house, and everyone reading a Christmas magazine when the meal is over. Christmas is decorating and shopping and wrapping and baking and planning. Christmas is much more fun as an adult, watching through the eyes of a child. I have had 40 Christmases to learn that.

I have had thirteen of those with my husband, ten with my daughter, seven with my son. I have had six Christmases since I knew I might not have many more. This one falls on a full moon, the first full moon Christmas of my memory. Perhaps someday, that is what I will remember of this Christmas, just as I remembered nothing of the others but a doll and a line from a note on a piece of construction paper: In the year 2015, we were all quiet and calm the evening of the sixth Christmas after, and there was a full moon, which there had never been on Christmas as long as your father and I could remember. And while you played and read, I wrote about it, because I could. Because I was there.

And they will remember, won't they? Of all the blurred memories they have of Christmas, they will have at least ten and seven that include me. And that is something we could not have known in 2010, or in 2013. Merry Christmas, everyone. I wish you all the chance to remember.

Sunday, December 13, 2015

Day 1,918: Christmas Tree Story

The world is too much with me. I haven't been able to justify saying anything here about anything. I also know that it is not a concern of anyone but me if I write here or not. I know that is probably the wrong attitude. Luckily, there is now definitive and fairly exhaustive proof that my attitude won't kill me or heal me one way or another, just like I never thought it would. Everything I can think of to write is a diatribe, and it doesn't seem like the world needs any more of those.

So maybe I should just write stories, so my kids can read them someday.

I thought this time I would write a Christmas Tree Story.

When I was 18 years old, we had the last Christmas in the house I grew up in. My parents had been separated for years but were not yet officially divorced; that happened several months later, and was quite a relief. I was a freshman in college and my brother was a senior in college, and it was the last time we would call Chicago "home" at the same time, given that we both lived in Minnesota, and once my brother moved out of Chicago, he never moved back. I am here and I am not, half the time wondering how the hell I can stay, the other half wondering how the hell I can leave, all the time frustrated by my allegiance to the idea of a place that doesn't show any allegiance to anyone.

But that year, 22 years ago, we had one more season in that house, and my brother and probably my mother felt sentimental. I don't remember feeling that way. And I do not mean I don't remember feeling that way that December. I don't remember ever feeling that way at all. Regardless, once we arrived off our respective Greyhound buses, we settled into our winter breaks. My boyfriend lived in Chicago and we looked at the six weeks we would have together as if they were years. Christmas seemed magical, if only because I had been able to get away from the life I thought I was stuck in; four months into my college career and it still surprised me that I had done that.

My little family went to get a Christmas tree a week or so before Christmas. I cannot tell you where we went. Every year of my life for almost two decades we picked out a tree from the same place and I don't know where it was or why we went there. It was always cold when we picked out the tree. We were partial to the eccentric trees, not too round, something with a little personality. We found one with little to no infighting for a change and they wrapped it for us in that plastic that I'm sure is never used anymore and had no real purpose even then.

On the drive home, we heard a strange sound on the top of our car. Something was squeaking; the tree must have been rubbing against something on the car. We pulled over, but still couldn't figure it out. Once we got home, we carried the tree to the porch so it could "set." What did that mean? Did trees need time to get used to the idea of being inside houses? I can't remember.

Once we deemed the tree worthy of coming inside, my mother made the discovery.

The sound we had heard on the car was a bird trapped by the plastic, dying a slow death inside our Christmas tree.

My brother took most of it out with a gloved hand. He vacuumed out what was left. That was the last time my family had a live Christmas tree.

A few months later, my mother moved to a small apartment. She bought a small fake tree to go with it. Though she lived in that apartment for a decade, she gave me that tree three years later when I moved into my first apartment by myself--no roommates, no boyfriend, just me. I took a second job as the manager of the building so I could afford it; I made about $20k a year working an a nonprofit at the time. Even then, that was a low salary. I remember those years in my own apartment, and later my own condo, which I bought when I was 25, with a fondness bordering on reverence. It is the dream of a loner to live alone. I could not give that up, not until I met my husband, and even then, I was wary. After seven months of dating he told me he thought it would make sense for us to live together--wouldn't that be fun? I wasn't buying it. I told him I didn't need his help with the mortgage, all the furniture was mine, the place wasn't that big--I didn't want to give up my independence just to live with someone. It would only make sense if I was going to do something permanent like get married. He said right! That's what I mean. Maybe we should get married.

And because society has conventions, I didn't know how to live alone and do that, so he moved in just before Christmas and we shared the holiday together under that tree as the beginning of the new family we didn't yet know we would have.

In that apartment I loved, in that condo, in our first house that we bought just weeks before we married, which we finally sold just weeks ago after 11 years, in this house with its sprawling common spaces and windows in illogical places, I have kept that little tree. There are ornaments from my childhood, some of which I made. Our kids' crafts are represented. There are ornaments decades old, nothing matches, the blue and silver garland is falling apart and isn't big enough even for this tree, and the lights are a different color than the star. My husband's Christmases are a mix of his mother refusing to celebrate and threatening to end her life each year and his grandparents in the Chicago suburbs welcoming him from California and insisting that the tree remain standing until his grandfather's birthday on January 10. Gabe's grandfather died a year or so before we met and he has been saddened by the fact that I never knew him from the very beginning. We have no ornaments from Gabe's childhood, but we put the tree up the day after Thanksgiving and leave it up until January 10 to this day, even though I can't stand it, because not being able to stand something isn't relevant in the scheme of things.

I started hosting Christmas at my place when I was 23 and unmarried without children and I still do. We throw way too many presents around that tiny tree. We leave cookies under that tree, and carrots for the reindeer, and cheese for Santa Mouse. We always get a thank you and a homily of sorts in return. I keep a bread machine in my basement just so I can make chocolate bread once a year for Christmas morning. I live in a neighborhood where some families have to rent out banquet halls just to fit the immediate siblings and cousins. A large Christmas at our house has nine people. I've hosted Christmas once when I was bald and two weeks out of cancer treatment--that was the year that Gabe's grandmother died just weeks shy of the holiday; two years ago I hosted while I was in the middle of chemo and 6 days out of having an emergency D&C due to extreme bleeding brought on by the poison. We've had pregnant Christmases and Christmases with babies. I've exchanged presents under that tree with boyfriends until I didn't have those anymore. We have maybe just this last Christmas left with our daughter playing along and fully "believing" in Santa, though she told us years ago that she didn't believe in Santa when she was 5, as she just figured it was someone in the family who hid presents after everyone went to sleep, until she realized that was crazy, because who wants to stay up past midnight? And she continues to talk to me about the sound of hoofs on the roof and how hard it is to stay awake even though you try with everything you have.

This is just a story of how we found our Christmas tree. I know we could start over again every year with a fresh one, or at least get one that is bigger or more impressive. But it's been 22 years and I think we are stuck. It fits, don't you think? Some people have Christmas trees. We have dead birds and actual spilled guts and families broken apart and terrible illness and new lives emerging and falling in love and being alone and being together and generally a mismash of everything.

I guess we'll keep it.

Sunday, November 15, 2015

Day 1,891: Headlines

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.

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 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 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.

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.

Friday, July 31, 2015

Day 1,783: Grief

“No one ever told me that grief felt so like fear.”
― C.S. Lewis, A Grief Observed

She was unwavering in her grief. I sat there, naked under the hospital gown, never in my post-cancer state allowed to undress just from the waist down even for an annual exam, feeling even more naked by my own interest in her words. I had never heard anything like it.


Her high pitched voice choked with sobs, screaming the same refrain over and over. She broke the pattern only twice, once to implore "What did I do?" the other to exclaim "No heartbeat! But the baby was fine!"


My gynecologist came in and greeted me as he always does, by calling me sweetie and slamming the door. He rubbed his eyes. I had heard his booming voice minutes before, saying Get her to the hospital. not here. FIX IT.

How are you? I said fine, which is never the right thing to say, because he wants me to say something else, something more. How're the kids, how's work. He always asks the questions one after the other and doesn't wait for an answer. He talks and I talk and we hear each other, but they are separate conversations. I like it. It's like family. I told him I needed to know if now was the time to get rid of that uterine polyp, because my husband is changing jobs and our insurance will be different and I think I should do it now.

He looked at me blankly. What are you talking about? He didn't remember. He started scouring my chart and he couldn't find any record of it. I didn't even remember when I had come in for that ultrasound (April). We never figured it out, not until later. He was too distracted; he never found the record. He examined me as he always does, without explaining anything the way some doctors do as if you are a child, he did it quickly, efficiently, and with enormous hands. He felt my breasts for full minutes. He is the doctor who found my cancer first, after I had found it, both times. He says things like this breast is perfect and touches my right breast one last time and I don't confuse his meaning.


You hear that? I feel terrible. You hear that screaming. Yes, I said. It's sad. She is so sad. She is fourteen weeks. It happens, I feel terrible, but it happens. Nature gives us gifts and it takes them away. He rubbed his eyes again.

We were talking around each other but my mind was elsewhere too. I could not stop listening to her. I had never heard someone be so honest in their grief so immediately. I thought of my various experiences with grief, especially the crushing grief I felt at my first cancer diagnosis, and I remember how I responded. "I'm sorry, but I have to tell you that we found abnormal cells. Specifically, we found cancer cells." I felt nervous and shocked and floored and grieved and I nodded to my husband and said "Okay." I could no more cry or scream than fly. Not then, not ever.

I think about all the women I've known who have suffered similar grief to this woman's grief. I thought about all of everyone's suffering, how it expresses itself. The swearing, anger, crying, collapsing, stoicism, misplaced humor, the silence. Grief manifests itself as it does. And yet, we seem to know how to manage it. We grieve in a way that makes it easier for others to witness. We suffer in a way that alleviates the specter of our suffering. People say things like "it will be ok," "it is for the best," people tell us so many different kinds of lies. Even when people say the right thing, when they simply say "I'm sorry," "I feel terrible for you," "I can only imagine how hard this is," it isn't quite right, at least I never feel that it is. What do we want from others when we grieve?

I think what we want is to not have to worry about what they have to give. We want to not have to respond, to not have to make it easier for them, but we have learned to behave otherwise. It is rare indeed to see someone or hear someone so completely unconcerned with anyone else's notion of her grief.


She could not be stopped or convinced otherwise. She heard nothing that was said to her. It was not all right and it was not for the best and everyone knew it and I found myself wondering if her immersion in her grief would be a blessing or a curse, and then I realized that was the wrong question.

The grief and suffering is real, regardless of how we respond to it. My stoicism does not make my suffering any less. My lack of tears, my quiet and my order and my going for a walk does not denote a different level of grief. The grief is still true. It is the same with love, and how we express it. There are conventions, to be sure, but acting outside of them does not take away from the love itself.

I thought of the only time I have ever seen myself, my mothering, expressed in someone else's description of parenting. I have many friends who write blogs about motherhood, I have stood in front of hundreds of people and read an essay about motherhood, but I never see myself in any story about motherhood that there is, and sometimes, I feel like I am wrong, like there is something missing or askew with me. But when Tina Fey wrote about her father's reaction to her getting slashed in the face by a stranger with a knife, I was supposed to laugh, or be horrified by the situation. I was not supposed to gasp and look around the room when I read that he threw her in the car to go to the emergency room, braced his arm over her chest and said "don't speak."

Oh my God, I thought. That's me.

And then I thought, how he must have loved her.

I stopped thinking about grief and Bossypants. I was still sitting in the exam room. I had to come back to reality, to talk to him. He was angry with himself. This doesn't make any sense. I remember everything that has happened with you. I remember everything I have said to you. I don't understand this. Where is that goddamned record!


At one point, he walked out of the room without saying anything to me. I am used to that by now. He went to talk to her. He brought his booming voice down. When he came back, he just switched gears. A lifetime of practice, I suppose. By the way, sweetheart. We don't even do this anymore, these paps, you don't need to come every year except you do because you are Kathleen Jacob and you are different after everything that has happened. Anything else? Um, I've gained some weight. Where is it? You look fantastic. Um I don't know. You just decided to eat then. Doc I always ate I just don't work out as much. You probably need it less now, need it less for your mind and your sleep. This polyp, what the hell. I'll do the ultrasound myself. He left in a huff, came back with a machine, did the ultrasound, found something but wasn't convinced. Problems? he asked. Well sometimes I have bleeding after sex, not much. It's not like I'm bleeding in the middle of the day. It's not like at the end of 2013 during chemo when I was hemorraghing for 10 days. It doesn't bother me. What did I tell you about this? Well, you didn't tell me much. You were trying to convince me it wasn't cancer. I wasn't worried that it was cancer, but you wanted to make sure I understood that. Of course I did. Think about all the shit that's happened. OK, get dressed. Come talk to me.

I got dressed and opened the door. There was silence in the hall. She had left. I went into his office, the same office I have visited for the last ten years. He talked to me about what we should do, he asked me how long it's been (cancer, of course I know what he means), he said it's been a hell of a ride, he told me about his daughter's internship at my company. I talked to him but I was thinking about him doing pushups on the wall while I labored with my daughter, I remembered all the times he called me from home, how I never spoke to a nurse, I remembered him crying on the phone the night before I was diagnosed the second time because he already knew, I remembered him visiting me in the hospital on his day off to meet my son, who was born three weeks early so he wasn't there to see it, I could recall the sadness in his face when he visited me in the operating room right before my mastectomy and how he looked from my husband to my brother and then down at the floor.

I remember everything I've ever said to you.

It was time to go and I knew what else it was time for, the enormous bear hug. I have never been good at hugging. I can do the casual quick greeting a friend hug perfectly. But the meaningful hug? I feel wrong, again, I feel amiss. My mother hugs me and I stand there. I hug my children awkwardly. The men in my life have always been more affectionate than me. I don't know how to hug them either. Boyfriends, lovers, my husband--their hugs are so complete, that I forget what to do with my hands, or maybe I never knew. At some point, around 15, I came up with a solution: I still just stand there, but with my hands on their chest. They never seem to notice my deficiency.

One time, I didn't hug my gynecologist correctly. His voice is always booming. What the hell! That's all I get?

One time, he said that he loved me. It wasn't even inappropriate.

I got up.

Sweetheart. You are doing great. I want you to know that I think about you all the time.

The birth and the death and everything in between, the sadness and joy of a decade. His arms surrounded me and he patted my hair and I stood there wondering how to hug him back and then it came to me. There are conventions, to be sure, but I could do it my way. And so I knew how to fix it.

I think about you and your family.

I stood on my tiptoes.

You keep doing what you're doing. Just keep going.

I put my hand on his shoulder.

I'll find that record, sweetheart. I'll call you. We'll make a plan. Say hi to the big guy for me.

I kissed my gynecologist on the cheek.

Sunday, July 12, 2015

Day 1,764: The Beach

Two years ago today: Waiting for the ring to come, knowing it will, hoping it won't, dreading it. Hearing it, hesitating only slightly, closing the door, answering it. Hearing the voice on the other end crack, pause, take a deep breath, tell you what she's been trained to tell you:

"I'm so sorry. This is not what you wanted to hear. This is not what we wanted. I'm sorry. It's a recurrence."

Crying furiously and fast, wondering why your tears never last more than 30 seconds, envying people who can get lost in emotion. Asking the questions you need to ask, getting impatient with her, wondering what you will say to your new boss at your new job based in another state that you haven't yet started. Hearing the pain in the surgeon's voice when she tells you that you will need to amputate, being angry that they don't just call it that, telling her you know already, because something went wrong and would just keep going wrong, there was apparently no stopping that.

It's come down to this, a rogue body part playing bad guy. You have been stripped of some of the things that other people used to define you, your hair, your perky breasts, eventually, your quick brain, at least for a while, and your energy. You are no longer a cancer survivor, at least not the right kind. You know that everything you have and haven't done for the last three years will be scrutinized by some people who are looking for a way to explain your bad luck. You know that no one will ever admit it, but some see this second cancer as a statement about you and what you have brought on yourself. You don't care about that and you never have, and that seems impossible, but it's true.

You should feel more loss than you feel. You have lost a lot of things, not just this time, not just in these last few years. This time you should mourn different things, especially your peace, your ability to worry about what other people worry about. You acknowledge the difference but you don't grieve it. You have lost people, a lot of people, though you have gained them too. You have lost many things, but it doesn't seem like it, and even on the days when it does, it doesn't seem to matter. You recognize that you have always felt that way, as if you acknowledge your own loss in an almost objective way, as if it is obvious, but not particularly interesting. You read a book once wherein one broken character says to another "you aren't fine. just brave." That seems almost right, but not quite. You are fine, and not particularly brave. You have no choice but to be fine. There is fine, and there is dead. Pain and suffering end, or they don't, because you die. There is no bravery in pushing through the only option you've been given.

You are the same woman now as the girl you were then. You have not changed, especially in your faults. You are stubborn and willful. You do not care if and how people judge you, though you probably should. You yell too much. You talk with your hands flying all over the room. Other women go first to hurt, or bitterness. You go straight to rage, and then it passes. Or, you go straight to humor. You are more sardonic than you used to be, but not by much. You don't hold grudges, and you often don't know why other people do, and it's not because you aren't paying attention, but because you honestly don't KNOW. You sometimes get your feelings hurt, but not often, and that can mean that people say things to you they wouldn't say to other people, and it should bother you, but you let it go. You are impatient and sometimes manic. You get too lost in your own thoughts, sometimes you forget how to talk to people. You never stop doing the things you do. You are not self-destructive. You are suspicious. You rarely illicit sympathy, and you never have, even as a child, and your husband has told you that you wouldn't want it anyway. You spend long periods of time alone, and you never feel lonely. You are antsy. You pace. You do not sit still. You do many things at once. You keep doing things.

You had three years, and then it should have been a new beginning, but you went right back. You've had two more.

These five years, these two years, have been years filled with things and happenings and everyone getting older. You have been unhappy and happy in these years. You have tried to figure out something about yourself, whether something is missing. Why don't you feel more urgently, why don't you fall apart? You once had the nickname "ultrasane," and you never knew if it was an insult or not, and you proved true to the name by not worrying if it was.

You think about it, but not very often: Waiting for the ring to come, knowing it will, hoping it won't, dreading it. Hearing it, hesitating only slightly, picking up the receiver, closing the door. Hearing the voice on the other end crack, pause, take a deep breath, tell you what she's been trained to tell you.

You find it hard to admit, but before you cried so quickly and furiously, you felt sorry for the woman who had to tell you. You thought it must be hard for her, to have to do that all the time. You closed the door so your husband wouldn't hear you hearing the news you knew was coming. You had to tell your mother and your brother. You didn't want to talk to your children. Other people's responses to your bad news have always been the most painful part of life for you.

You thanked the people who responded, who didn't leave, and you did it much more than once. One day last summer, you said:

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today.

What's important is that I'm still in the boat. I haven't capsized yet.

Thanks to those who are still swimming next to me, still standing there with a life jacket. One of these days, I'll meet you at the beach.

But then, you've been going to the beach all along. You often don't think to call anyone and you don't always get in the water. But you've never stopped going. That comment about the beach: It was the right thing to say, and it wasn't. Like everything.

Your mother once said that you should do what you do best. You should not sink and you should not swim. You should...float.

You float. You lie still, arch your back, look too long at the sun. You feel cold and warm at the same time. You can hear people talking, but they sound impossibly distant. You end up much farther from where you began than you expected.

This is what you have, this floating, and most of the time, it makes up for whatever is missing.

I've already met you at the beach. You might not have noticed me, but I've been there all along. I just haven't quite known what to do with myself when I'm there. Any minute now, I'll cut the water with my legs and join you in the shallow. Promise.

Tuesday, June 30, 2015

Day 1,752: Sunburn

When I was 19 years old, I burned myself with an iron.

Twenty years later, it's funny to think of myself ironing. My mother ironed every day, everything--tshirts, even. My grandmother had one of those old fashioned irons--no cords, just pounds of iron heavy in your hand when you heated it over a fire and hoped no one startled you. They used to iron sheets. Why did anyone do that? To kill vermin, I suppose. Me, on the other hand, what was I doing? It was summer. I was 19, home from college, looking for a summer job. I wasn't going anywhere special that day. I had one of those portable ironing boards you place on the floor. The phone rang, and I moved my arm to answer it. It was such a small movement, something you do multiple times a day, every day. My boyfriend said hello and I gasped from the pain. I had placed the iron standing up on the board, and my arm went straight against it. "Oh my God. I have to go." I hung up the phone.

This was no minor burn. The burn immediately broke, and bled. It covered almost my entire forearm. My mother lived in a tiny 3 room apartment, and she was in the galley kitchen. I ran in, stoic as always, not crying, but grasping my arm. I told her I had burned myself. She looked at me blankly and said "I'm baking a pie."

I did not know what to say to that.

I waited for her to react, to realize, but she didn't. My brother was visiting home as well. He had graduated from college and was in grad school. He was 22. He too looked in astonishment at our mother. And then he said "Uh, OK. Katy, let's go. I'll take you to the hospital." We drove to the emergency room; we might have talked, we might not have--I don't remember. I grasped my arm as hard as I could so that I could feel some pain that was not the pain I was really feeling. And isn't that how it is with everything?

Back in those days, with the way health insurance worked, the emergency room was not a place you could visit lightly. I was put on the phone and forced to talk to an insurance company representative and self-diagnose how bad the burn was. I was not the right person to ask, with my high tolerance for pain and assumption that it could always be much worse than it is. They sent us away, to an immediate care center. Once there, the nurse was aghast that they hadn't treated me at the hospital. She scrubbed the burn, dressed it, told me I was lucky, as it was very close to third degree, and gave me instructions on how to take care of it at home.

All my life I've feared being a burn victim. For as long as I can remember, it has been my worst fear. Cancer hasn't changed that. Burning, my loved ones burning, the pain, the numbness, the smoke, the disfigurement. This burn, however painful, was so small. It covered just a quarter of one of my arms. But when my mother, who had come out of that pie-stupor, tried to change the dressing, she was so gentle with me that I knew it wouldn't work. Her dabbing at my skin would not get the job done. I remembered how the nurse had scrubbed, how tears sprang to my eyes. I took the cloth from my mother and scrubbed that burn myself. The pain was excruciating. I had to bite a toothpick in order to clean it. My body changed temperature, I broke out in a sweat, I felt nauseous. I felt weak, pathetic. They had warned me of how burns, no matter how seemingly insignificant, impact the body. It isn't voluntary. How do people survive major burns, I wondered? I thought of a newspaper article I had read as a child that haunts me still. A young girl, burned in a house fire, her nose burned off, her lips gone, her entire body burned. She sat in her disfigured state with her arms crossed in defiance on the school bus where no one would sit near her nor talk to her. I asked my mother why she was so angry and she told me "look at what she does every day, what she has to do. Maybe being angry is what it takes to do that." I saw anger differently after that.

Who was I, with this tiny, insignificant burn? Why couldn't I sleep without holding my arm straight out? I could not let the lightest sheet touch my skin. My boyfriend slept with me in a twin bed in that tiny apartment and made himself smaller next to me so that I could lie with my arm outstretched. The next day, he changed the dressing for me--he was the only one besides me who could do it. I still remember that.

For years, that burn came back every summer. With the return of the freckles on my face, a perfect pink triangle (half the size of the full face of an iron) would appear. It got fainter with time. I thought it might be permanent, an involuntary tattoo. Eventually, it disappeared. Ten years later, maybe, fifteen? I don't know. One day I looked, and it was gone.

When I was 35, I burned myself with radiation treatments.

It's funny, five years later, to think of everyone's surprise at how my body handled radiation. The fair, freckled redhead, who barely burned, well not until the end, when the sunburn spread across her chest. The sunburn not caused by the sun, nor an iron, nor a fire. The sunburn that altered the DNA of the flesh it touched. I remember the radiation technician who compared me to a Thanksgiving turkey, surmising that I didn't burn because I had no fat on my chest, and just think, when you deep fry that turkey, it's the fat that burns hottest. I remember running into the house after my last treatment and ripping off the radiation tape, and some of my skin with it, and not even caring.

It has been years, and that burn comes back every summer. There is no sunscreen that can match it. After the long Chicago winter and this year the long Chicago rain, I will find sun and water again but I will also find that burn faintly spreading over my chest. I will be lying there, reading a book in the sand, and my husband will stop building castles with the kids, walk over to me, and point: "Kate. Your chest."

Oh right, I say, putting more sunscreen on, knowing it won't make a difference. My chest will be twice as dark as any other part of my body. It's my job to accept that, his job to casually notice it, my body's job to remember.

There is no larger lesson here. This is just to say. The light and the heat are beautiful and deadly. The warmth gives us life and the heat brings our greatest pain. The beach and the quiet and the perfect waves and the bald eagle flying over a rainbow the evening before the Aurora Borealis appeared coexist with the rawness and the illness and the reminder of what it all means.

Everyone has it, I suppose, all of us have this burn. On some of us, it is simply easier to see. Our bodies tell us every day, they try and try to remind us. All of us have that tenderness that makes us cringe from the most loving touch. All of us are marked.

Sunday, June 14, 2015

Day 1,736: To a Man Who Doesn't Drink Coffee

After more than five years of writing this blog, I've come to a point where I don't often have anything to say. Well, that's not entirely true. I have a lot of things I want to say, a lot of things I want to write about, but I'm really busy, and many of these things wouldn't "fit" with this blog, and I am terribly neglectful of LiveChickenOnSix. I've always been cognizant of the fact that when one writes a blog, especially one about something as mortality-related as cancer, there is a sense of urgency related to writing about special occasions. If we don't acknowledge them, how would we feel if that birthday or Christmas or graduation turned out to be the last one we witness? If we don't write about them, does it mean we don't care, that cancer hasn't made us better and more grateful? Who are we trying to please--ourselves, our loved ones, the amorphous ether?

After five years, I realize that my motivations have never actually wavered--they have just become less pressing. I still write this blog as a love letter to my family, in case I don't make it out of this mess. I write it for my kids, so they will know something about me after I'm gone, whether that is sooner or later. Sometimes, I write it out of a sense of practicality: people want to know how I'm doing. I've failed miserably there, of late. I never wrote about my clean mammogram or getting "promoted" to screening, rather than diagnostic, annual mammograms--like a woman who has never had cancer (twice). I never wrote about my 3 month checkup with my oncologist (I'm fine, I look great) or how I've graduated to six months. I didn't write about my terror over being so tired for two weeks, with a terrible, persistent wheezing cough, and how I had to try to hide my fear of metastatic breast cancer to the lungs. I never wrote about the uterine polyp they found that I am supposed to have removed but DON'T WORRY KATY IT'S NOT CANCER and you know what, Doc? I'm too lazy and tired of going to the doctor to even make that appointment. If I start bleeding to the point of anemia, we'll talk.

So I haven't written about my health and I haven't written about much else. I wrote something short for Augie's birthday, and I am writing something today, for Gabe's 40th birthday. I told the kids I needed to go upstairs to write and Lenny asked "you're blogging today?" She sounded surprised. I told her I always wrote something for all of their birthdays. She got mad: "Hey! You've never showed me anything you've written for my birthday!" Au contraire, mon frere. Remember how I read that letter to you in front of hundreds of people? But, on the other hand, she's right. Someday I will need to let the kids read this blog. I guess in one way, I've been waiting for them to discover it without my help. But I digress. It's Gabe's 40th birthday. That's a big one. We met when we were 27, got engaged at 28, married at 29, first kid at 30. A decade more has passed, and so much has happened. Neither of us signed up for what we got, but no one ever does, and we are happy with it, happier than we expected, probably. Gabe has been dreading this birthday. I don't get it. I like getting older. Hell, I've been trying for 40 since 34.

He wouldn't let me throw him a party. His desire was to have a birthday wherein he "didn't have to talk to anyone." Well, that didn't fly with me, though I can relate to the sentiment. So, I got a half dozen of the guys to come over last night. Gabe jerryrigged some situation with our tv and computer so we could watch the Blackhawks game on the porch. I bought a chocolate cake and put out some chips and guac, cherries, and Doritos. These guys were so excited about Doritos. They drank scotch and I watched the game with them and then left them to their own devices for a few hours. I got Gabe a bouquet of flowers, some chocolate, some tshirts that talked about him being 40, a Death Star rug, and...this.

I wrote this for my husband for his 40th birthday because I've been short on words. Poetry is the best response to that. I handed him a copy of this in a frame, and he cried before he even read it. Then he went into the other room and read it and cried great heaping sobs into a pillow on the couch. And so it goes. Gabe cries, I stand by awkwardly, our kids make fun of us both. Happy birthday, baby. I love you.

To A Man Who Doesn’t Drink Coffee
For Gabe on his 40th birthday
By Katy Jacob

You don’t know coffee.
You don’t know the steam on your face
or how it’s best when it’s burning you.
You don’t know how to hold it in one hand
with a cigarette in the other, you don’t know 18
and getting both the French press and the smoke rings wrong
but getting the sepia of that memory just right.
You don’t know when it’s good and when it’s just necessary.
You don’t know spending $30 for the right bag.
You don’t know how it makes you feel like Paris
when you’ve never been to Paris.
You don’t know the headache or why it’s worth it.
You don’t know sitting on a back stoop
on a windswept frigid day and everything feeling like home.
You don’t know why milk but no sugar.
You don’t know paying a dollar and playing gin
until they turn off the lights and close the place down.
You don’t know reading the newspaper in silence
at 15 and your mother passing you a mug.
You don’t know wishing for a better vice.

You don’t know this—especially this:
You don’t know that I see you
and how I have seen you these twelve odd years,
blurry eyed and stumbling in the dark,
making a habit of my habit, making sure it’s waiting for me.
You don’t know that I think about it,
how and when it ever started, that I don’t remember,
and anyway, even if you do know, you don’t.
You don’t know coffee, but there you are all the same,
every day of this too-short life
we’ve vowed to spend together,
scooping and pouring out love
in just the right proportions.