Friday, March 27, 2015

Day 1,658: 100 Word Blog Post Challenge


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.

Monday, March 9, 2015

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

Monday, March 2, 2015

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, 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.