Day 1,658: 100 Word Blog Post Challenge

Swimming

At some point, they just knew. My daughter’s tiny legs churning behind powerful arms. Butterfly, backstroke. Silently pushing the water for hours, hardly getting tired. My son would sing and talk; was he paying attention? One day we had the pool to ourselves. He swam laps unassisted for an hour, kept jumping in, bellyflopping on purpose, hurting himself, laughing.

My husband holds his breath when he swims. I learned to swim 35 years ago; I’ve forgotten some things, but not my best thing: I’m an expert at floating. I can stay afloat, unmoving, a “dead man.” But not.

Day 1,640: A Letter to My Daughter: You Are Not Your Body

Yesterday was my daughter's ninth birthday. I intended to write this yesterday, as I have done for years for both of my children. But fate had other ideas. I was felled by a stomach virus so severe I lost more than 5 pounds in 36 hours. I haven't managed to eat anything except a piece of dry toast and a cup of Jello today. I stayed in bed for the whole of Lenny's birthday. She opened her presents in our bedroom. Gabe took the kids out to brunch and to a craft store and I was secretly glad they were out for so long, so they did not have to hear me getting violently sick so many times. I missed her birthday party. I felt a twinge of guilt about all these things, or at least something akin to it. And then I realized it might not really be GUILT, but regret for having missed it. And then, finally, I realized I hadn't missed it at all. I was here for my daughter's ninth birthday--I was just a little laid up. My husband might have had to decorate the house for the party, but I'm the one who planned ahead and bought all the supplies last weekend. I bought most of the presents, though he had to wrap them. I planned the party, he oversaw the chaos. I was here, alive whether I felt like it or not, to wish her a happy birthday.

So I had to wait a day to write this post for my daughter's birthday. I am still not myself. And yet, I am, and that is exactly what I want to write about today. I don't know if I will be able to explain what I want to say to my daughter in a way that makes any sense, but I am going to try. Perhaps the letter format works best for these things.

Dear Lenny:

Now you are nine years old. When I began writing this, you were four. And by "this," I don't mean this blog--I mean this letter I am writing right now. We've had almost five years together since this letter began. There are a few things that this writing process over the years has taught me about myself and the world that I think I have been trying to understand and articulate all of my life. I want you to know so many things, I want to be here to teach you so many things, but it's hard to know where to start. The easiest thing to do is just to start somewhere.

I want you to know that you are not your body.

I have secretly harbored this thought for more than 30 years, but it has taken almost five years of rambling prose to enable me to understand it.

Your body is an ever-changing part of you. There are things that will happen to your body. Other people might try to hurt you or use you by violating your body. Your body might betray you. Your body might stop working. You might be revered by some in part for your body. You yourself will take great pleasure from your body and what it can do for you. Your body will also experience great pain, and some of it will be worth it--such as having a child--but so much of it will not have any purpose but to bring you true grit.

I have often felt out of place because of how I have interpreted the things that have happened to my body because of cancer. The early-onset menopause was the hardest part; it affected my sexuality and that was so hard to bear, I realize now, because that was a part of MYSELF, not just my body. Does that make sense? It affected my desires, what I thought about, what I wanted to do, how I felt around my husband. It affected something that was inherently a part of ME.

But losing my breast, having only one nipple, being lopsided, losing my hair, getting skinny, being fatigued, being cancer girl or cancer mom or whatever some people think I am? I don't know that any of it has bothered me the way it was supposed to. The hair was the hardest--before it happened. I envisioned how different it would be to no longer be treated as the woman with beautiful long, curly red hair, I imagined that I was losing a part of my identity, my personality.

I was wrong. I lost my hair, and that was it. I felt exactly the same with no hair as I did when I had hair. Other people treated me differently, that's true. But that was their problem, not mine. My problem was having cancer. If someone decided to pity me or look away when seeing bald me in the grocery store, well, that had no impact on whether or not I remembered to get everything on the list. I didn't feel ugly, or unfeminine, or de-sexualized. I felt...bald.

I have never felt like the experience of cancer has taken away the belief that I should be healthy and vigorous. I have never held that belief, not since I was six years old.

Having 100 seizures a day did not make me feel like a different child. Kids becoming traumatized because they witnessed my seizure in class did not make me question the value of myself or lose my sense of humor. I did not feel like less of a person--because I was a little kid, and little kids often don't know any different than whatever is put before them. They don't think about how it is supposed to be, because they don't know.

My body was treated as something others would find pleasure in regardless of what I thought about it from the time I was very young. I did not feel less worthy as a person because of this. I have had to fight other people's bodies with my body. I never really "won," though in important moments I did get away. I was little and I am still kind of little and there is nothing wrong with that. Don't ever let anyone tell you differently. Your being petite might be a blessing and a curse in how people treat you, as it was for me, but it has nothing to do with who you ARE. On a related note, your athleticism is something to be proud of and to enjoy for how it makes you feel. If you lose it, you will not lose yourself. I'm telling you this because you are nine.

When I was nine, my world crashed in on me. One minute, I was happily walking home from school, waiting to see a friend. I was tiny and fast and played basketball and could jump rope for hours without stopping. The next thing I knew, my life was flashing before my eyes (it's true, it happens. and all I could think was That's it?) and I was sure I would be dead when I hit the sidewalk. I wasn't dead, but almost. I lost the ability to walk, to go to the bathroom by myself, to play, to jump, I had next to no rehabilitation and would experience lifelong pain and physical limitations. I understood that death was real and it would happen to me. I began to fear atrophy more than any other thing because now I knew what it was like. I was in a wheelchair. People stared at me. I was discriminated against, barred from getting an education. But I did not feel like a different PERSON. My life was wholly different...and yet, I was not.

I have carried that with me. I see that now. I did not hold on to an idea of myself as worthy in spite of the physical things that have happened to me, but because of them. I do not want you to have to go through any of those things. That's why I'm writing you this.



People will tell you things. They will tell you that you should feel beautiful, sexy, desirable, worthy, no matter how you look. You will get the message that "men love all kinds of bodies." I am here to tell you not to listen. You should not feel worthy because of anything having to do with how your body looks, feels, or works, one way or another. All of it will change. The body is transient, and fragile. You are not. I have heard it so many times: "You will still be beautiful." "He will still love you." I do not want you to fall back on those traps. Focus on what you think, what you find beautiful that is outside of yourself, what you love. Those are the things that matter for you.

People will tell you, or let you know in a thousand ways, that finding fault in yourself is the acceptable way for a woman to be. People will encourage you to constantly "overcome" the faults that you perceive in yourself. It will become en vogue for you to talk about yourself as flawed, and even more acceptable to talk about how you overcame your negative feelings about yourself. There will be focus on feeling "empowered." I'm telling you right now not to believe the hype. Life is too short to spend trying to prove a point. I want you out there in the world doing and feeling and thinking things, things that are outside of yourself or your physical experience in the world. Just do what you do, and don't go looking for validation. Know that it's already there. Also know that people might not like it if you know that. At times it might be more socially acceptable to be unhappy with who you are than to be at peace with who you are; save the time you could spend worrying about that and again, do something in the world. Make yourself heard.

What matters is that you remain yourself. You are worthy regardless of how you look, whether your body works correctly, whether other people make criminal decisions related to your body, whether he or she loves you. I do not want you to be slammed with the realization of your own mortality or physical vulnerability because something shocking happens to you. I want you to live with that knowledge every day, before, during and after the shocking things happen, and just keep doing the things you do as long as you can. Then, when you can't do those things anymore, do something else.

It's hard to see how life can change you and cement who you are. The other day I was telling your father that I will never know how cancer has changed me as a parent, because I have had cancer for most of my parenting years. And he was emphatic that I was wrong:

"No, that's not true. You had four years before cancer. You were exactly the same parent then as you are now. If anything, you are more yourself now, because you don't care about how it looks to other people. Cancer hasn't changed you, and I'm glad."

I don't know if that's true. What matters is that I live with a person who doesn't think I needed cancer to make me better, because I was good enough already. And I didn't need for him to say that, because I knew already that it was true.

I told him something else the other day, that I never related to how so many women lose a sense of themselves because of cancer. Of course, I have felt depression, sadness, anger, fear, and so many other things. But I have never wondered "what has happened to me?" I said that I thought that was because I can't remember a time when I didn't disassociate my body from my sense of myself. People assume that such disassociation is negative. I think there is a good reason it works as a defense mechanism. You are defending yourself, the part that no person or circumstance can strip from you. That is not to say that I do not feel very strongly with my body and make decisions for what I want to do with my body that are mindful and clear. I am very attuned to my body--after all, I found this cancer twice, when no one else thought it was there. But when something has gone WRONG with my body, when someone has WRONGED my body, I could separate that from my understanding of who I was.

I want you to hold on to who you are, no matter what happens to your body, and I hope that only wonderful and pleasurable things will happen to it, but I would be a different kind of mother if I were to believe that to be true.

Just hold onto yourself. You have been yourself since you were born and you are just becoming more of yourself, in spite of the rest of us, in spite of everything. At 18 months old when the daycare providers insisted on calling you Lenora, you told them otherwise: "I AM NOT LENORA. I'M LENNY."

That's what I want for you in this ninth year, which changed everything for me thirty years ago. I want you to know what that means. You will always be yourself. There's only one Lenny. Don't let anyone forget it.



I love you. Happy birthday-- a day late. --Mom

Day 1,633: #MetsMonday

I am writing this from my favorite room in the house. It is all sunlight and books and clothes strewn in a haphazard fashion on the guest bed here in my home office. The door is closed so that the sound of my typing doesn't become a distraction. I am not working today. There is a sick person in the house, someone who is tired and listless and vomiting.

That person isn't me.

My son, who is not quite 6, has some sort of stomach bug. He is fairly miserable and the house has been wrecked with the smell of vomit and diarrhea. My children never get sick and I had almost forgotten what to do. All of our children's medication had expired years ago, so we needed an emergency pharmacy run to bring his fever down. What do sick people eat, or drink? I mean, people who aren't grown, who can't just look at this as a temporary chemo famine, who don't have enough body there to support what's leaving their bodies? What do sick people do? What do I do for them?

And then I remembered. I just need to let him be sick, do what I can, and hope he feels better. I secretly hope that I won't catch this illness, though that is in the back of my mind. Right now, what matters is not that I could get sick, but that he already is, and I feel badly for him and wish it was over. There is a lesson there. Do you see it?

Today my son who is in kindergarten is home sick. Tomorrow, he will probably be running around and driving me crazy again.

Today is also #MetsMonday, a day dedicated to education and awareness of metastatic breast cancer, which is the only kind of breast cancer that kills, and it kills every single time.

As of now, metastatic breast cancer kills every single time. It is incurable.

I, and other women with early stage breast cancer, still have a 1 in 3 chance of developing mets in the future. Early detection saves not even 10% of the population from developing advanced disease that will lead to their deaths. For most with early stage disease, mets wasn't in the cards. It is not because we are ass-kickers that our disease does not progress. For those who never develop metastatic disease, it is because...their cancer was not that aggressive. Their solid tumor responded to treatment and no microscopic cells got away. It is not because of "smart" surgery decisions that some of us live and some of us die. Metastatic disease cares not one iota whether or not you had a mastectomy. Solid tumors in the breast do not kill women. Read that and repeat. Breasts are irrelevant to the possibility of surviving breast cancer. It is the errant cell that traveled the bloodstream and made it to the liver, the brain, the bones, the lungs, that will kill 50,000 women (as well as a few men) in this country this year, whether they have breasts or not. And no one knows who is who, or when it is coming, or if, or how it will feel to suffer like that if it happens to her.

While it is true that we will all die, and anyone reading this could die in a freak accident tomorrow, and I am much more likely to die before age 45 than any of my friends or acquaintances who have never had cancer, it is a fact that every single person with metastatic breast cancer has been given a sentence that does not end with "surviving." Average survival after a stage 4 breast cancer diagnosis is 28 months. For many women with TNBC, for which there is no targeted therapy, that timeframe is much shorter.

If I were to be diagnosed with stage 4 TNBC tomorrow, I would most likely not live to see my 42nd birthday.

And yet, I have not received that diagnosis. I live with the fear, at once palpable and seemingly impossible, of receiving that news. But the fact that I could get that phone call pales in comparison to the importance of the fact that so many people already have.

Breast cancer has become too commonplace. That is not to say that too many women have it--of course, that is true. Rather what I mean is that people shrug their shoulders at it, throw parties in its honor. People buy pink shoes and garden implements and play pointless Facebook games and talk about tits and hair and strength and hope. The emptiness of the message belies the truth of the disease. We've staged a boxing match but the game is rigged. We tell ourselves there will be a winner, and that winner will be the one with the most moxie, when in fact, we placed all our bets on the guy who was most likely to leave with a concussion that might kill him later anyway.

If you buy pink, if you tout awareness, if you tell your friends and relatives with breast cancer they will "beat it," know this. Almost no money from the plethora of pink merchandising goes to any breast cancer cause at all. Even less goes to programming. Even less than that goes to research. And only about 2% of all research dollars for breast cancer goes towards attempting to tackle stage 4 disease, which is the only breast cancer that kills people. And Stage 4 breast cancer kills people effectively, efficiently, and tragically. A breast cancer death is not a sudden heart attack. You have to suffer first.

Be aware of this: the culture of breast cancer has created a schism among women with the disease. There are those who have mets and those who do not, and way too often, those in the latter camp live in fear not just of the disease but of those human beings who occupy the former camp. Women with early stage disease are actively encouraged to tout all they have DONE to FIGHT and BEAT a disease that has nothing if not randomness on its side. If we give up ice cream and live to be old we are encouraged to pat ourselves on the back. If we give up ice cream and die next year, society does not want to know that. We are only supposed to be bald once, to go through treatment once. We are not supposed to bother the world with having cancer for the rest of our lives. The culture tells us this is TIRING. The culture encourages women with lazy or passive cancer to feel superior to women with brutal and aggressive cancer. But we are all living in bodies where something went wrong. Nobody wins.

Hell, it didn't even take a diagnosis of mets for me to see the fear in people's eyes when confronted with my recurrent cancer. YOU, Katy? But, wait, how could that happen to YOU?

I know, I know. I am no Melissa Etheridge. I have never gone on the record to say how I "beat" and "cured" my cancer with various methods within a year of finishing treatment. I hear women say such things and I just shake my head. Oh, honey. You have no idea if you are cured. You could have mets right now. It's hard to know that, it's hard to face. But it's true.

On this #MetsMonday, I encourage you to lean towards real breast cancer awareness. Do not shy away from people who are dying or will die from breast cancer. Do not pretend that those women do not exist--the research dollars are doing a good enough job of that. Do not treat breast cancer as a game that worthy people win. Do not allow yourself to believe that breast cancer is nothing more than a rite of passage that ends with a cute haircut and a new lease on life.

The truth is hard. But it is worth hearing. When I hammered my oncologist with questions about chemo options after my second diagnosis, he handed me some truth. He said that we are years away from knowing what works for someone in your specific situation. If in ten years, we know with evidence that someone like you would benefit from a certain chemo treatment and you did not take it, and you are still here, then...you are doing well.

And his smile told me something that I already knew: I might be one of those people who still has ten years, and I might not be one of those people. There's no way for me to know. But for all too many women, they already know that those years are something that will happen to other people, not to them.

The sun and the books and the mess and the child hugging a stuffed robot in his bed and the husband who is working and the friends who are reading this and the promise of another day will exist, but not for them. Remember that. Be aware of it.

Day 1,607: World Cancer Day 2015

I was trying to think of what I wanted to say for this World Cancer Day when I came across an article called "Believing that Life is Fair Might Make You A Terrible Person."

If you're wondering what I've been trying to say for almost five years now--read that article.

That's it. That is what I want to focus on for this World Cancer Day. The point of such a day is to attempt to bridge some of the gaps in how cancer is experienced around the world. Much of the focus is on acknowledging the disparate impacts of having cancer based on where you are lucky/unlucky enough to be born or to live. If you live in a resource-rich country or society, you are more likely to survive cancer. World Cancer Day is a time to be open to discussions about all types of cancer, all outcomes of cancer, all potential risk factors, educational opportunities, and treatment possibilities. It's a tall order, and I'm not sure a day really cuts it. But its existence enables some important discussions.

My discussion will be a small one, probably an irrelevant one. It will start with the premise that cancer is a worldwide problem, an ancient problem. Cellular dysfunction is not new. Cancer does not exist because we drive cars or eat bread. Environmental impacts are important to understand, but as recent studies have shown, "bad luck" explains the majority of cancer, to the extent that it can be explained at all. Cancer has happened to me and it could happen to you. It will, in fact, without a doubt, happen to someone or multiple someones you love. Some of those people will die and some will not and the difference will be completely arbitrary. There are ways to reduce your risk of cancer, but there is no such thing as cancer prevention. We all know how to be healthy: exercise, sleep, maintain a healthy weight, eat good wholesome food, avoid smoking and drinking and most other bad things in excess. The idea of a healthy lifestyle should be no different for someone who suffers from cancer than it should be for anyone else. And yet, there are those who are very healthy who will get cancer. There are those who live unhealthy lives until they are 100. As a society, we have chosen--and yes, it is a choice--to collectively focus on cancer as some kind of character flaw, battle to fight, or opportunity to prove our moxie.

On this World Cancer Day, let's choose to just stop.

Cancer is like most forms of suffering. There are ways to lessen the possibility of it happening to you, but no way to ensure that it won't. Believing that kale or a coffee enema or a conspiracy theory will save you is selfish. Expecting people with cancer to have a certain attitude or deal with it in a certain way is selfish. Choosing to believe that those who are working slowly and tirelessly to attempt to solve the riddle of cancer actually want us all to die to pad their pockets is selfish.

There, I said it.

There's a reason this type of thought is selfish. It negates the strides that have been made at the same time that it ignores the possibility of doing anything to bridge the existing gaps in cancer care. Denouncing big pharma and cancer research ignores the lives of people who have survived breast cancer, Hodgkin's lymphoma, and leukemia due to herceptin, chemotherapy, and Gleevec. Cancer research is slow and involves a lot of failures; for every promising lead, there are probably ten setbacks. Everyone wants the "cure" and the "miracle" but the reality of life is that strides might need to be measured in who is still alive now who wouldn't have been 50 years ago, or today in a low-income country where there is limited or no access to detection and treatment. We might never be able to rid our world of cancer, but acknowledging that fact doesn't mean we shouldn't try.

Believing that you can prevent cancer through "good" behaviors negates the randomness of disease and therefore makes it next to impossible to focus on what to do next. Epilepsy is an ancient problem, for example. For a long time, people with epilepsy were considered to be evil, symbols of the Devil, witches. They were exiled and burned at the stake. And yet, of course, they went to their colonies and their fiery deaths with just as much epilepsy as they had prior to the punishment. At some point, we progressed beyond that barbarism and realized that epilepsy is a neurological mistake. We still do not understand it. We still cannot control it in fully one third of patients (here, in the United States, where treatment exists) for whom no medication, diet, or brain surgery is effective. All those who suffer from epilepsy live with the reality that it might follow them, or lead them to, their graves. But we have made incredible strides in dealing with epilepsy, and I am a living testament to that fact. As a society, we no longer seem to be interested in blaming those with epilepsy or deriding them as failures or demons.

So we absolutely must stop treating cancer patients as such.

When my cancer recurred, at first, people reacted with so much support. But then, the reality seemed to dawn on many. She seemed so healthy, she should have beat that, I guess this is really no big deal for her, I don't know what to say, maybe if I ignore her the specter of her recurrent disease will fade away.

We can accept cancer as a party, as a fight, as a show of bravery, as a monster to beat. We can accept cancer as a thing worthy of our disdain because cancer picked the wrong bitch. Sometimes, we can even accept that cancer is hard on people and that it leads to long-term physical and psychological issues. We can accept that because that implies there are specific, tangible things to try to FIX.

It is hard to accept that cancer just is. It is hard to accept that cancer comes back. It is hard to accept that cancer kills people, including some of your favorite people, including children. It is hard to accept that not all cancer is the same--including the same types of cancer. It is hard to accept that we don't know who will live or die from cancer. It is hard to accept that it is expensive and time consuming and messy to try to combat cancer through research and medical trials.

It is especially hard to accept that cancer could happen to you, or your husband, your sister, or your child. And yet, the fact that it is hard doesn't mean it isn't true. We need to stop allowing the fear of cancer happening to us to lead us to a place were cancer patients themselves are feared, judged, derided, or, worse--made invisible.

In a comment about the article I linked to here, I said this: "Being unable to function because you might potentially suffer negates the reality that people are forced to function through suffering, sometimes unimaginable suffering, every day of their lives. There is no long arm of justice that will save them, or you. Thus it is imperative for us to strive to be that arm, or at least to refuse to be the hand over the mouth of the suffering."

Remember that on this World Cancer Day. We are all flawed, and it is only through flawed people pooling resources that we have ever, or will ever, solve any of the problems of the scourge of cancer. I am not a genius who knows how to cure cancer, and neither are you. But you can do something else: acknowledge it as the unfair scourge that it is, and refuse to turn away from or isolate those who suffer from it.

Believe cancer. Believe people with cancer. Know that you can't fix cancer. Know that no one expects you to do so. Look cancer in the eye, as so many of us who have no choice do every single day. Do not engage cancer in battle or debate. Sit down at the dinner table with cancer, and don't be surprised if cancer asks for seconds, or thirds. Then, look beyond cancer at the person whose body it is inhabiting, and ask that person to stay a while.

Here's to World Cancer Day, folks.

Day 1,593: Graduation Day

For many young women with cancer, the constant doctor's visits are a foreign thing, experienced maybe only with pregnancy, and in that case, for an obviously much happier reason. For some women, the tests and questions are new and intrusive and overwhelming. But not for me. I'm used to constant doctor's visits, as I've had them since age 6. I used to have to go in every six weeks for major blood draws that left me weak due to my tiny size. I found the needles fascinating, the other tests such as the reflex hammer simply bizarre. I never questioned the routine of going to the hospital every month and I accepted all the procedures, including those that turned me into a virtual lab rat back in the infancy of pediatric neurology. Pregnancy brought more of the same, and then cancer meant that I would seemingly always be one of those people who lived her second life in the harsh florescent lights of the exam room.

At some point in breast cancer treatment, these visits seem cathartic. Suddenly, everyone on earth has seen and felt your breasts, and you don't even care because it's all part of the plan. Chemo infusions are a terrible ordeal, but they remind you that you are DOING something. Radiation becomes a second commute to a second job that you go to every day. You cannot go more than a few months without seeing an oncologist or a surgeon or both; they examine you, ask you questions, make it seem like you are doing well.

And then, something happens. It happens slowly but all at once. If you are someone like me who has so far (but maybe not forever) avoided a metastatic diagnosis, you "graduate" to visits every six months. By the time I had my recurrence, I had "graduated" to annual visits. In May of 2013, I had a normal mammogram followed by immediate visits with my surgeon and oncologist, and everyone told me I was fine. I celebrated being three years NED, that huge milestone that seems like a miracle for women with TNBC, and I looked forward to not going back to that hospital for an entire year.

The elation didn't last long.

Within a month, I had found a new lump. Within weeks of finding it, I would be diagnosed with cancer for a second time. And then I went back to ground zero, a new cancer patient who wasn't new at all but still needed to see a doctor all the time.

I am tired of it. I am not a woman who finds solace in these visits. I don't find comfort. On the other hand, I don't feel much anxiety anymore. I don't ever think to ask my husband to accompany me. I sleep fine the night before. My oncologist doesn't do labs or scans. He examines me: takes my vitals, feels my breasts (the real one and the fake one) and my arms for lymphedema, listens to my heart and lungs, and asks me how I'm doing. He and I both know that there is not a test in the world that could predict or prevent metastatic breast cancer for me. Why suffer through the inevitable false positives? Why put myself through the emotional heartache of waiting for test results? Why expose myself to more radiation? No, there is nothing to do but wait.

I had my 3-4 month checkup with my oncologist yesterday. It was the first time I had seen the physician's assistant since I was in the middle of chemo. She greeted me as if I was a long lost friend from high school. Her face just beamed. I remember her face when I was re-diagnosed. She was crushed; she actually had tears in her eyes. She was shocked, and I could see it. This time, she just told me I looked amazing! and it was so great to see me! All of this should be behind me now! Did I have any questions?

And the doctors of the world will never know this, but those of us who have lived our lives in and out of hospitals always have little questions in our minds that we will never ask, not out of fear, but out of some kind of misplaced pity. How can you ask for reassurance from someone who is unable to meaningfully give it? It is impossible to ask an oncologist the questions you want to ask. It doesn't mean anything. So they ask if you have questions, and you think

when will I get over this casual indifference to everything?
how long will I feel so comfortable in my self-imposed isolation?
will I ever stop wincing when speaking to the 8th grade boy next door, just because his voice has changed?
how will it feel when I'm no longer the youngest person in the waiting room in this place?
now that it seems that I'll make it to 40, what are the chances that I'll get to be old?

No, you don't ask those questions. You don't ask any questions at all, because you don't really have any. This is a crapshoot and you know it. Asking for reassurance is almost selfish at this point. Instead, you start to tell her things. You tell her about your chemo brain and how it seems to have subsided. You tell her that you've held onto the weight you gained with chemo (you gained weight? I always thought of you as super skinny! says the much skinnier PA) and you don't care anymore because you work out a lot but you're not as manic as you once were, because really, so much of that was nerves. You tell her you always had trouble sleeping, and then you had cancer, and then you REALLY had trouble sleeping, and exercise was the only thing that helped, but then your cancer came back and you were like, well, maybe it's time to sit down and eat a damn sandwich, because what's the difference? And she nodded her head like "I know that's right!" but of course she doesn't really know, but in another sense she does, because she's seen so much worse than you. You talk about your son's night terrors, which she knew nothing about, and she seems horrified for him but also for you, which is odd. It never seemed like his nightmares were a cross to bear when there were other crosses.

And that's it, isn't it? I have had enough bad things happen not to see other people's bad things, or good things, as a reflection of or conversation about me. Augie's night terrors were his own. I felt sad and sorry for him, and I also understood him all too well. I did not think it was something I could not handle because I had other things to handle. It wasn't for me to handle, because there was nothing I nor anyone else could do. Augie had to get through that himself. All I could do was be there and love him. I could not experience that terror for him and I could not take it away from him. I knew therapy would probably not help him, though we did it anyway. The only thing that helped was me finishing chemo. I told the PA that, and she looked at me thoughtfully.

I realized it must be hard to hear that things just must be borne out when you are in a profession focused on fixing problems.

Our visit was nice, friendly, even enjoyable. She asked me if I wanted to see the doctor, and I realized that was my choice now. I didn't need to see him. I figured I was there, so why not? And then she told me I didn't need to come back for six months. It's been almost two years! If I didn't want to come back in the week after my annual mammogram (I always try to schedule mammograms on the same day as surgeon and oncologist visits, to minimize the number of days I need to make the trek to the hospital), I didn't have to do that.

Huh.

I was still thinking about that when the doctor came in. When I made the mammogram appointment--a year in advance, because even when you've had breast cancer twice, the top research hospitals in the country are still too booked to deal with you--I didn't even think about the fact that my oncologist wasn't in clinic on Thursdays. By the time it occurred to me to worry about it, maybe a month ago, there was nothing to be done. I could not get the appointments on the same day. I found this annoying, but not alarming. It didn't concern me to go to my mammogram and then just go home. That in and of itself is amazing.

But now I know things that I didn't know before. I know that tests and visits might give the illusion of solace but they don't give the promise of cure. I know that I am just as, if not more, likely to find my disease myself, as I have done twice now. I know there isn't much left for anyone to do for me.

I asked the doctor if it mattered about the post-mammogram appointment. I told him that since my surgeon had moved out of state, I didn't have one to see. He said there was nothing for them to do anyway--as long as I was seeing someone, that should be enough. He said it didn't matter if I saw a doctor after the mammogram, because...and then he said nothing. So I helped him out:

I know, I've done this twice now. If they saw something on the mammogram, I wouldn't be leaving this place. They would find you or someone else, no matter what, no matter who was on duty.

They would send you right down the hall.

I know. I would go straight to the (biopsy) table.

We had a small silence.

He filled it with a version of the thing he always says to me, which is "you look great!"

This time he got more specific: "Your hair looks great!" Then he said "You had long hair before, didn't you? Your hair was long even before we started all of this." WE, doc? That's so cute.

Um, yeah, it was, I said, amazed that he remembered that, except that of course, back then, every single person in the cancer center marveled at my long curly red hair and treated me like I was about to experience a death in the family and it was my hair, not me, that they mourned. So I said, yeah, I had long hair, but I don't ever want to have it again. And he said this:

"You'll have more time to focus on other things now. This is the new you. You look great!"

Other things were said; he joked with me, which I still find remarkable. We're like a couple of old people who have forgotten what we used to fight about because it doesn't matter anymore.

I realized when I left--I walked the roughly two miles between my office and the hospital both there and back--that I had left them feeling more reassured (she looks great! she's doing well!) than they had left me. I made them laugh. I spared them the tough questions. I asked the oncologist about what I should do and whether I should worry about the kind of chemo I did almost out of deference to him, as opposed to real concern. He told me to eat well and exercise but not to think about it too much, that there was nothing special I should do, there was no evidence saying I should have done anything differently, and happy new year and we will see you in the summer.

As I was walking briskly through the picturesque skyline that is simply better than maybe any other skyline anywhere, I thought about something I had said during a book club meeting recently. Now that my chemo brain seems to have left the building, I can hardly stop myself from reading. I didn't realize how much I missed being able to get through a book. Regardless, while discussing a book at my house, a woman was telling a story about a momentary fear she had of a bomb scare when she was in Europe with some students. She said, of course it was fine. What are the odds you are going to be someplace where something like that happens?

And I said, well, the odds that it would happen to you are the same as the odds of it happening to someone else. The freakish things that happen might as well happen to you.

People laughed, and I realized it must sound like such a strange thing to say. It must seem paranoid, desperate even.

But that is what I have been saying for all of these long years--there is nothing sad, or depressing, or fatalistic about recognizing that the crises of fate that happen every day to someone else also happen to us, right now. It is the absurdity and the randomness, the seeming unfairness, that can bring us all together, allow us to feel some real empathy. If you recognize how close you are to being on a train car where a bomb might go off, you will begin to see trains differently. And that is not to say that you will stop going places, or drive a car instead. It means that it will seem remarkable how many trains there are without bombs, and it will seem beautiful to imagine all the places you can go.

We can't protect each other or ourselves from life happening in ways we wish it wouldn't happen. We can't ask others to tell us it will be all right when there is no way for them to know that. We can't feel burdened by other people's terror or jealous of other people's joy. What can we do?

When the social worker pulled me aside after my appointment and thanked me for filling in the survey about my energy and anxiety and moods, she said they wanted to help, they wanted to know how to provide services, to help me through everything. We talked for a bit, but what could I say?

"I'm good, actually. I've done this before, twice now, I've been doing this for years. I think I've got it figured out."

We are here to help you, she said.

"I know that. I know you are. Thank you for that."

People are there who would like to help. Some things can be fixed, and some things can't be fixed. But the fact that someone would like to fix it, the fact that someone who has seen countless people die of my disease can see my missing gorgeous hair as nothing more than extra time for me to spend on my precious life, the fact that my friends are happy to see me "graduate," the fact that my husband responds to my text telling him about the six month milestone with nothing more than "I love you," that's it. The world is filled with people who couldn't care less about me or anyone else, and somehow, in the randomness of fate, I stumbled across some people who cared.

What are the odds?

Day 1,581: The Drugs Don't Work? One Year Post-Chemo...Again

One year ago today, I finished my six month round of chemo. It was the second time that I did chemo for the last time. The chemo I chose was an "old school" model; it seemed more innocuous, in that it didn't throw me into menopause, I could eat, and I didn't lose all my hair. But over the long course of six months I had a variety of side effects and issues, both large and small. Part of the thing about chemo is that all the outside world considers about it is the POISON aspect. They think about how it kills your immunity and your hair follicles. Well, not all chemo does that, or at least not to the same extent. My blood counts stayed excellent throughout chemo last year--until the massive hormone changes brought on by the drugs (something almost 100% of women and girls experience from chemo, though it isn't talked about as much) made me bleed so heavily and for so long I became anemic. I had terrible vertigo while on chemo; I hardly realized how I walked, and even drove (I shouldn't have been driving, probably, at least not towards the end) in a state of constant crookedness. I was often in a near-faint. My hair thinned. I had terrible fatigue; something I hadn't really experienced the first time around. The AC chemo brought me to my knees, to be sure, but this MF chemo was a sly one--I would feel ok and then my body would just give out, I would feel as if I could not move. I had chemo brain, and truth be told, I still have it. I am oddly ashamed of that fact. It has gotten better, but for more than a year I couldn't concentrate enough to read a book straight through. I wrote lists of things, including people's names. I couldn't remember anything. And please don't tell me I'm just getting older, or that I'm a mom, or any of that. Those things are true. But on top of that--on top of all that--I was going through six months of chemo, and it caused chemo brain, which is a terrible name for a very real problem.

This is all to say that chemo is awful.

And I did it again, and I would do it again, if I have to, which I really, really, hope I won't.

I say this knowing it might not have worked for me either time. My oncologist was honest with me about that when he told me the second time that he understood if I didn't want to do chemo again. He said, there's a high probability it won't work for you, because there's a high probability you won't need it. But there's nothing else for you, so if I were you, I would do it. We could give you different chemo. I asked about platinum-based chemo, saying I didn't want to do that, and he said that for someone like me, TNBC, but not BRCA positive, no evidence of a DNA-repair-resistant disease, very early stage, with all the cancer successfully removed, there was no evidence that would help me above anything else. We sat there looking at each other, contemplating the absurd crap shoot. I railed against the idea in my mind. I said I still didn't want a port, even with six months of infusions. I said I didn't want to take side effect meds (and I didn't--none at all for six months; they gave me half a dose of Zofran through my IV before each infusion to make sure I wouldn't vomit up the drugs, and I relied on acupuncture to help with all the other side effects).

And then I danced that dance again, and started chemo two weeks before I started a brand new job based in another state. I did the second round of chemo with my family. I say that because we went through it as a family, and almost as a family alone. Friends and others had a hard time knowing what to make of a person doing chemo AGAIN. Wasn't I supposed to be done? Didn't I beat that already? It couldn't be that bad, right?

Of course, it was bad. In some ways, having to do chemo again was more devastating for me than having my breast amputated--in fact, it was more devastating without a doubt. But here's the thing. We have created this weird cult of personality for chemo. We talk about chemo, and oncologists, and cancer treatment, in a way that we don't talk about any other health issue or disease. We've created a cancer conspiracy, where chemo really kills you, and oncologists want you to suffer and die, and the poison will take everything good from your life.

And yet...look at me now. Look at me for almost the last five years. You can go through hell and come back. Some people go through hell for their entire lives. Many people with epilepsy do this. Anti-convulsants are just as poisonous in many ways as chemo. What is chemo? Chemotherapy just means chemical therapy. Most chemos, though not all, are derived from plants. They are no more unnatural than anything. Hell, there are berries and mushrooms in the pristine wild that will stop your heart in an instant. You can go on and on about the health benefits of pot, and you're welcome to, but you might get some with some bad chemicals put into it by some shady dude and be screwed. There are "natural" supplements that cause heart disease. My liver was poisoned by Depakote (a drug that caused high levels of toxicity in my body and that I would hate to take ever again, but that other people take gladly for depression, not just seizures) years before it was poisoned by Methotextrate. When I was 26, I had my gallbladder removed, and they showed me a picture taken with the laproscopic camera of a liver that belonged to a 65 year old alcoholic, not a 26 year old who was straight-edge for almost all of college and then some.

When I went in for chemo, I refused the drugs other patients asked for more of: Benadryl, Zofran, Ativan. If chemo brought me to my knees, those easily-accessed, common drugs made me feel like I had no knees at all.

So it was hard. And yet here I am one year later, one year after "finishing" chemo...again: active, healthy weight, fertile, still relatively brainy, kinda cute hairstyle, the only adult I know who hasn't gotten a cold or flu this winter. My immune system is kicking ass and they gave me a raise and a bonus at my job and my kids are a year older and my husband still loves me and my friends still tolerate my eccentricities. You do it, and it ends. Or even if it doesn't, you do it. Because what else is there to do?



This leads me to what will be a short discussion of this very disturbing story about the 17 year old girl with Hodgkin's lymphoma who is being forced by the government to do chemo. This story is unbelievable to me on many levels. The first is that agents of the government believe they have the right to force drugs into someone's body. She is a minor, I suppose--but barely. How is it possible that they can force her to have a port? I didn't agree to that, and I refused to be treated at a hospital that would have made me have one placed. Port surgery is real surgery. Can the government enforce surgery? The port itself is not life saving. The side effect meds are not life saving--are they going to force her to do those too? Where does it end? Could someone have done that to me? Could they have said, but we think it's better for you to weigh 118 pounds and never sleep at all for a week at a time than to be nauseous, 110 pounds, and sleep at night? Because I would beg to differ.

Who gets to decide? The answer is obvious: she should. And please don't start in on things like measles, or ebola, or leprosy or smallpox, and the government making demands about vaccines, medication and quarantines. No one can catch cancer. No one else has their life put in danger because I, or someone else, has cancer. You and you alone suffer through this disease. The same is true for all non-communicable diseases.

She should have the choice. But the second thing I don't understand is why she would make that choice. Her cancer is incredibly survivable with chemo and incredibly deadly without it. To believe otherwise is to believe in the conspiracy. Where did that idea come from, who started the story about the cure being worse than the disease? Have you ever seen someone die from metastatic cancer? It is a horrible death, natural or no--people rarely go out without extensive suffering. Cancer is not a heart attack. And in this case, hers is not a gray area like mine, where no targeted treatments have been developed. I did chemo knowing it might not work, that the chances were high that it might not, but also knowing that there was no Herceptin or Tamoxifin or anything else for me. Women with all kinds of breast cancer do chemo knowing that if their cancer metastasizes, they will have terminal cancer. Not all cancers are that way. If I had been told that I had an 85% chance of being cured with chemo and an equal chance of not living to 20 without it, I would have probably put the needle in my arm myself. Those kinds of chances are a gift straight from science. It's a modern miracle. It's the legacy behind a woman I see at my local pool who has raised three boys and is almost 30 years out of the same kind of cancer this young woman has. Her biggest medical complaint these days is (natural) menopause. If I hadn't shown up bald at the pool, I never would have known she had cancer in her early 20s, had gone through extensive radiation and chemo, had a recurrence, and survived. It's not like you can TELL.

But it isn't for me to say.

What is for me to say is that chemo is chemo, it is an attempt to eradicate a disease that is not well understood today but it much better understood than at any point in history. Chemo is very hard on the body, but the body can be very hard on itself. Drugs were hard on my little body as a child as well, but they led me from a place where I had 100 seizures a day and inevitable brain damage and cognitive delay to a place where I had zero seizures a day, a normal childhood, and a chance for an intellectual career.

Sometimes it's true that the drugs don't work, they just make you worse. And sometimes, that's just a song to sing when you're feeling hopeless. I am so grateful to not be in the middle of chemo right now. I am so glad to have made it a year past treatment. And yet, there is a part of me that is afraid of this one year mark, because if my cancer is bound to come back, it will probably be in the next few years, and I will be that much closer to the potential end of my life, which seems more unbelievable than any other thing.



How could this person be sick? How could this person be dying? What a world.

It's better to live in it and be of it than to turn away from it in fear of what it might do to you.

This is just to say. A year later, and I'm still trying to walk away, still exhibiting too much attitude, still writing this, still here.

Day 1,569: KatyDid 2014 Year in Review

I have a confession. I have absolutely no interest in seeing Facebook's idea of what my 2014 was like, and since I keep it real here in cyberspace, I'll admit that I have yet to click on a single one of those recaps. Since there's some kind of strange, unseen pressure to write blog posts that coincide with events, such as the turning over of the year, I thought I would do something different with my own recap. Here's the KatyDid 2014 Year in Review. See if you can tell what I did here.



No one ever wants to hear anyone talk about death, especially people who have reason to believe they might die sooner rather than later. But I have cheated death 5 times--5. I don't have to apologize anymore. I have little to no nostalgia about the past--I think about it a lot, but I feel no loss or longing. I long for the future. I want to keep telling stories. I want to have stories to tell that take place in 20 years. I want to just be healthy and live in my body like it is a normal body, though it never has been, regardless of what it looks like, this body is a story in itself, a character in its own right. May it take a long, long, time to get to the end.

And so it goes. These things can be said in the same tone as many other things: I woke up today and could no longer walk. I had 100 seizures today. I am in a wheelchair, I need someone to move my body so I won't get bedsores. This medication is poisoning my liver, but I need it to avoid potential brain damage from seizures. My gallbladder needs to be removed. There's a gun at my head--a real one, all metal and coldness. I am a baby but that penicillin nearly killed me. I am bald. I had my breast amputated. I am hugely pregnant. I am too skinny due to chemo sickness. All of those statements describe things that have happened to the body, to my body. But it is just a body. Its purpose is not to be beautiful, to look young, to be a subject of comments from strangers. Its purpose is not even to help push through suffering, nor to experience joy in all the things it can do.

Those decades of others defining me by my hair were just that--other people's opinions, other people's judgment. It had just about jack shit to do with me and who I was.

I have written about (my son’s) night terrors, and yet…I have not. I have not written about the look I see on his still sleeping face, when his eyes are open and there is something in his eyes and his scowling face that I have never seen on another person before, a look of pure rage. And then, he begins to fight. He jumps up and down, he flails, he screams in an inhuman fashion, he throws things—all kinds of things, including his favorite things. He throws with perfect accuracy, at the thing, that bad guy, RIGHT OVER THERE, as he points, and fights. He fights the thing that makes his team miss the field goal, the thing that does things he cannot mention, he fights us, he fights himself. His fists pound, he gnashes his teeth, he screams “DAD! CAN YOU CAN YOU CAN YOU!” He screams that he has to tell us something, but it is something he cannot say. I try to comfort him and sing to him and do motherly things and he looks at me as if I am not there, because I am not, I am not in his dreamworld. I am in his real world, the world where cancer ends and death is not hiding right behind the edge of his door. I exist in his world where the edge has not been built yet, where there is nothing so monstrous to fight, where throwing things is not a way to save your life but a thing you do with your mother in the snow in the sun in the yard in front of your house.

There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.

I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice. The thing is, I think that the whole concept of choice is actually just privilege in disguise.

There was death, looking right at us, lingering in the corner right next to life. And there it was...AGAIN. So many things have happened. And yet somehow, through all of that, the initial drama, the kids, the cancer...it's like we've been on a really, really long date for the past 11 years.

We started to ride. We were sprinting. I was thinking about the time when Gabe and I went to Maine, for my 28th birthday, when we had been dating a handful of months and were newly in love and our lives were laid out before us like the lighthouses beyond the black rocks. And then, I began thinking about a conversation we had last night, in bed, about whether or not he saw me as disfigured. I don't normally see myself that way, but for a fleeting moment, I did. And he got very quiet and said nothing. I asked if he missed my old breast. I thought he wouldn't answer me. And then finally he said "a little bit. but it's not about how you look...it's just..." and his words fell away and I knew what he meant: I miss how it was before--before we knew. Before it happened.

I am not super-maternal, so I don't miss the baby stage specifically. I miss the opportunity to have brought another interesting person into my family and the world. I have dreams about kids who don't exist and never will. I have fantasies that I don't even tell my husband about, where we take in some wayward youth, some teenager who has no other place to go (Gabe has always said we would do that, as if it were a given--it's one reason he wanted a bigger house, I guess because he feels the need to pay forward what others did for him), and part of the reason that I think about that is because I don't really believe that I will live to see my kids become teenagers. I believe it is possible, but I no longer feel it is likely. So I have these thoughts and then I let them go. I don't cry, I don't get lost in nostalgia, I just feel loss, and even though I am stoic and always have been, even though some people have told me I'm the wrong kind of mother, the wrong kind of woman or wife or whatever, I still feel this loss. And it's real. And it's because of cancer.

She has always been the sensitive, quiet type. And I don't mean she is actually quiet, though I suppose around strangers she is; she even manages to act shy around her closest friends until she warms up to the idea of them being there. I mean she is quiet in that she's not talking. She keeps everything to herself--especially the bad things; her fears, her concerns, her pain. This is the kid who potty trained herself at 2.5, and in the middle of the night we would hear her get up, run to the bathroom, flush, wash her hands, and put herself to bed. She would take care of her own nosebleeds, no matter how severe; sometimes, we would go into her room in the morning and witness the blood bath. Why didn't you come get us?! we would ask, and she would shrug and say, "I didn't want to bother you." She is not particularly affectionate, has never been cuddly. I know a girl like that.

At one time, I was a planner. Then, the plan changed. As all mice and men know they are wont to do.

I want women to be considered brave for being brave, not for looking "other." I want people to give cancer patients credit for staring death in the face and shrugging their shoulders, not for coping with disfigurement with grace. As women help their children plan their futures, knowing full well they might not be there to witness them, I want people to notice the resigned and wistful look in their eyes, not the hair on their heads or the swell of flesh lying on top of their broken hearts.

That's what we have--science and faith and hope, technology and art, progress and the knowledge that some things never change. All we have is this human striving for immortality, the one thing we collectively know is impossible to achieve. And because we know that desire is futile, we try to do something that isn't. It's in that space where we live our best lives.

And so again I ask, who am I if I am not a fighter? And really, what am I supposed to do now?

And now, I am still sprinting, but they are micro-sprints. There is no 26th mile. There is no 5 k. There is the house three doors down that my mother let me run to as a child, and I know that when I reach it, I have to just turn around and run back. That is what I am doing right now--running back and forth between what is happening this moment and what will happen in the next few hours. There is nothing beyond that. There is race after race, but they are suicide sprints.

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today, on May 4th. 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.



And then, he did the thing that only Augie does, that someday too soon he will be too embarrassed to do. He grabbed my face with both of his hands and swooped in for his kiss, and then gave me a crushing hug. And then we just looked at each other for a minute, forgiving each other for how hard we've made it for the other by feeling everything so completely, nodding at each other, acknowledging the life and death that tie us together and make us ask imploring questions in the dark.

What I do know is that the fog is lifting for me a little around here. I can imagine making other decisions, reading great books again, maybe even making plans. I can imagine living a long life. Even if it doesn't come to pass, I can imagine it. I can see myself the way others see me, as the one who did things they had never seen before, who gave voice to things they were afraid to bring up, who just kept taking the hits because having wounds that heal is better than being knocked out cold.

So, I get you, with your exuberance for the little things, your sheer force of will, your impatience and your rhythm and your lack of self consciousness and the deep thoughts you have and your interest in the whole world including the things you know are too old for you like sex and whiskey. You try me, because seeing you is like seeing myself, though you are a tad wilder and a much better liar. And I remember what was going through my mind, and the things I plotted, and I know we have our work cut out for us. The chickens have truly come home to roost.

That--that thing you told your brother, that made him nod his head like it was the most natural thing in the world: "She will always be our mom. Even when she's dead." And if I believed in a different type of existence, I'll tell you what. I'd be damn proud of you both, even then. Even when.



I remember being young, and keeping journals. I remember how I rarely wrote when I was happy. I remember that my best poems are the saddest ones. And I know that we have been given a range of human emotions for a reason, and that we should not ignore those that are hard to feel in favor of those that are easy to feel. I remember when I wasn't afraid of grief.

I stayed up last night listening to the loons call, right off of our dock, so close it was as if they were in the house with us. I asked Gabe if they were nocturnal. He said he didn't know; maybe they were, maybe they just acted like it sometimes. I thought that was a good answer. It was a beautiful night and the wind had been so strong that some of the bugs had blown away. Maybe they knew it was impossible to tell when they would get another night like that, and they didn't want to miss it. These days, more than ever, summer is like that.

But I've said it before in this forum and I will say it again--not yet. Not yet. I've said those words to myself every single day of the last year, of the last four years, really. The ability to say them is a privilege denied to many. So what can I say but enjoy your years, and the age they bring. Live in the skin that holds you, not the skin that holds someone else or the person you might have been.

You know, a lot of times, some good comes out of responsible adults forgoing power for the sake of it. Sometimes, it's good to hide knowledge from people you love in order to protect them. Maybe there's a reason to close the gates. I'm just saying. Until I started writing this blog, I never revealed the deep parts of what went on in this mind, through all of the different physical and emotional trials. Just ask my mother. As a kid, I wasn't talking. And so what? Does that mean I was damaged? Maybe I spared others the specter of my thoughts. Maybe that's a real thing, and not a bad one. Maybe women can be nuanced, not just literally fire and ice.

And though my mind was not lost in other thoughts, and I did remember and think about what my family didn't say, now I can know this: I have given my family the kind of summer I remember. Maybe we have had those kinds of summers all along, no matter what else was happening. My children have had summers just like the ones of my childhood: colorful but already faded, busy and lazy, stubbornly placed outside of the real world, full of nothing more than the memories you'd like to keep.

I didn't cry when they were born. I didn't cry when I found out I was pregnant with either of them, even Augie--and I never expected that it was possible for me to get pregnant again. I haven't cried for any of their transitions with schools and child care centers. I can't think of any milestones that made me cry. Of course, this doesn't mean I haven't cried over my kids. I cried a whole hell of a lot when I was first diagnosed with cancer. I cried just from looking at them. The whole thing just broke my heart, to think what I had to give up, what I had to stop doing, what I might miss. I cried when I saw other people's children and teenagers. I just cried and cried and I felt like someone else.

And this, this writing, is the one thing I have always done, without feeling like I should be doing something else, without worrying about whether I'm any good at it, without caring if anyone read it, without it seeming like work. I've had 39 years of stories to tell and a way to tell them. I hope to have many more, but I know I might not. These years are something that for all intents and purposes should never have come to pass, not considering everything else that's happened.

It's a fiction, and we know it. It's a story we tell in the hopes that it might come true. No one here expects a happy tale, but we would like it to be interesting. We would like to tell each other the story arc and choose our favorite characters.

And now I want to enjoy what I’ve built here.

I'm tired of it, and that's why I haven't written much lately. Sometimes I am absolutely astounded when I think about the fact that I have had cancer, much less that I have had it twice. It doesn't seem possible, and yet I can hardly remember not being this person. I feel like my marriage to cancer has wilted on the vine and maybe it's about time for me to take a lover.

I want to live in this world, with its moments large and small, moments of real grace. I want to live in a world where people have seen enough of what the world really is to look at each other knowingly, without pity or sorrow, and silently affirm that when it all started, we were all beholden to someone else to survive, and it will be that way again, and again.

My mom made a toast at the wedding. It was the only one. She said "here's to ten more. and ten more. and ten more. and ten more. and ten more. and ten more."



I think of age as the privilege of seeing your life as a really interesting story that is sitting on the bottom of the pile of millions of interesting stories. I think of age as not having to worry about leaning in or leaning out but rather just...kicking back. Kicking back and flinging the ash off the cigarette that you're not supposed to be smoking and that you're probably holding wrong and just watching the people pass judgment on you one way or another and not noticing anything but the curl of the smoke.

At the end of the day, I don't think kids care who is a default parent and who is a back-up parent. I don't think kids think about their parents like that at all. Kids love their parents for being their parents. For all the kids out there who have an actual default parent, because the other one is dead, the only thing they wish is that the other parent was still there, being imperfect, watching basketball and yelling at them about shoes, going out to work or the gym or for a walk, but at least, miraculously, coming home again.

So on Thanksgiving, maybe that is what we should give Thanks for--the opportunity to experience life in fellowship with others. We should give thanks not just for being lucky or blessed but for knowing what luck and blessings are and how easily they can be stripped away. We should reflect on the temporary nature of our luck, and the permanent nature of our temporary-ness.

Sometimes I feel that I am always telling this story, the same story, over and over again. It is not a story about cancer. It is a story about luck. It is a love story. It is a story about the things you say when there's nothing right to say. Every story we tell about ourselves is really a story about someone else, and I don't mean it's a story about who we were or who we might be--I mean it is actually a story about other people. It's in the reflection, the looking back, that we see not only ourselves but all the others that are standing nearby.

Remember how magic works. Augie told Lenny that it's not just that Santa is magic. That's not enough--that wouldn't get the job done. So how does he do it? Remember this: "He stops time."



That's 2014, folks. A paragraph from every KatyDidCancer post in 2014, from the beginning of the year when I was still in the middle of chemo, until today, when I am still in the middle of life, where I've been all along. Thanks for joining me.