Friday, May 29, 2015

Day 1,720: The End (Now I am Six)

The End
by A.A. Milne

When I was One,
I had just begun.

When I was Two,
I was nearly new.

When I was Three,
I was hardly Me.

When I was Four,
I was not much more.

When I was Five,
I was just alive.

But now I am Six, I'm as Clever as clever.
So I think I'll be six now for ever and ever.

Augie, today you are six. I honestly don't know where you came from--who are you like? Me, I suppose, though your grandmother will tell you I wasn't quite as sneaky and I did listen, at least occasionally. You're like Calvin without his tiger Hobbes, or maybe you are just like yourself. Sometimes you are so difficult I can't even stand it. It's not hard to be your parent--it's easy, because it's easy to love you, but it's hard not to focus on the struggle. And no, it's not because you're a boy. It's not because you're active, or smart. It's because you're a nut. You say and do things that seem impossible. Your dad suggested I write this blog post about your "larger than life" personality. I don't really know how to do that. So I'm just going to quote you instead. Here's some things that you've said recently that have made me...pause.

OK, Mommastine (when you're in trouble and have your full name Augustine shouted to you);

This is my story. This is the story of the Dark Pizza. He's a bad guy, because he's angry, because he got burned.

I think God is dead. (reconsiders) God is the wind.

I don't know who those girls are. Girls talk to me, and I don't even know them.

Wait. You mean it's possible to play football AND sing on stage?

I know you think I should practice piano with both hands, but you don't seem to realize my hands are very small.

DAMN!! (when losing at air hockey)

I wish we didn't ever have to die.

Girls are the ones who get cancer, because girls are the ones who have babies.

I’m afraid that when I’m dreaming, that I will never wake up. I’m afraid that the dream will never end. I’m afraid that when I’m awake, I’m actually still dreaming.

Babies don't always need to come out of a mother's body to be born. Not if you're a platypus.

Being six feels the same as being five. But does being dead feel the same as being six?

Heavy sigh, kid. Heavy sigh.

Happy birthday.

I love you.

Tuesday, May 12, 2015

Day 1,703: The Other Side

The first time I spent the night in the hospital, I was 8 years old. It stretched into a week, as my neurologist insisted on using me as a guinea pig of sorts rather than admit that I was having a toxic reaction to my anti-convulsants. By that time, I was fairly used to doctors and hospitals because of my years with epilepsy. I still resisted with all my might when I realized I had to go back to the hospital six months later after the car accident I barely survived. As I rode in the ambulance, I said "I don't want to go back. Can't I just go home?"

But that's me. Me, not my kid. I've gotten used to things for myself that I could never get used to for my children. I recognize that that is one kind of luck.

My kids are very, very healthy. Lenny caught every illness known to man, including Fifth Disease, Hand, Foot, & Mouth--you name it, during the first two years of her life when she was in daycare. And then--she was like a tank. Even when the rest of us were sick, she was healthy as could be. Augie has been really healthy too. When they both caught a stomach bug earlier this year, we hardly knew what to do with ourselves. Lenny hadn't missed a day of school in over two years.

Fast forward to this past Friday. Everyone was fine at dinner. Augie went to his swimming class afterwards and Gabe went to the grocery store. On these Friday nights, if Gabe and I don't have date plans, Lenny usually reads in her room while I read on the couch in the living room. The house is quiet and we don't feel the need to converse; it's a calm, relaxing way to spend an evening. And so it was for a while this past week. All of a sudden, into the silence, came the sound of Lenny bounding down the stairs. She started screaming: "Mom! My throat really hurts! I think I need to go to the doctor!"

I stared at her. Where did this come from? I took her temperature--no fever. I asked her some questions. I offered her some pain medicine and told her we would get her an antibiotic in the morning if she wasn't better, as we had recently learned that a few of her friends had strep throat. I put her to bed. I was puzzled by the suddenness, but not overly concerned. The next morning, she wasn't better. She had a low grade fever, but only for a few hours. She was vomiting. Strep, we thought. We got the script from the doctor. She was telling us that it hurt to breathe--specifically, that it hurt in her throat. She felt it was easier to breathe after vomiting. I was worried, at that point, but wasn't sure what it could be. Gabe was out taking care of some things for most of the afternoon, and Lenny took a nap. I checked on her and saw how she was breathing. Her breath was short and labored. She looked frail. I texted Gabe and told him she needed to go to the hospital. He seemed dubious but came home, we called some emergency rooms, decided on the one that was both closest and had no wait time. We both expected her to get her vitals checked and come home.

Two days later, she came home.

Within a short time of arriving at the hospital, Gabe texted me to tell me she was put on oxygen. Her heart rate was as high as 150 beats per minute. Her blood pressure was high. She was sent for a chest xray. Meanwhile, Gabe sheepishly told me that in his haste, he forgot his wallet and therefore didn't have his insurance card. I had to pack Augie into the car and take the wallet over. I still did not pack for the night; I just didn't believe she'd have to stay. Gabe had texted me a picture of Lenny with the oxygen mask. He told me that she had requested to stay in the hospital: "I think I should stay here. They have machines that can help me breathe." She was telling us, telling all of us.

Once at the hospital, things got strange. A woman pulled me aside as soon as I got to the room, and she didn't let me enter. "I need to talk to you." Oh shit, I thought. There's something very wrong and she just doesn't think Gabe can handle the news. Or, he's acting like a crazy person and she won't talk to him. What is it, I asked? "Well, I need to have you sign these forms." Um, ok, but it's his insurance. She insisted that I sign everything. She whispered to me (it's true--she acted as if we were sharing a secret) "I always ask the woman. I know you are the ones who manage the finances." What the hell, I thought. What if I hadn't shown up? What if she didn't have a mother? Was she just going to stand there and assume my child's father was an idiot? Now granted, he had forgotten his wallet, but I gave up the detailed focus on finances back with my first round of chemo and I've let him handle that stuff for years, especially after chemobrain. I was getting very agitated and then realized I needed to just ignore this woman and get into the room.

I talked to Lenny, and she seemed to be in ok spirits, considering. Augie ran around and it became clear he needed to not be there. I took him home and put him to bed. Within a few hours, Gabe texted me to say she was going to be admitted. She was not getting better. We were both in disbelief, as she had been fine just the day before, and now she was so sick she needed to stay in the hospital. We had to make some decisions. I texted the next door neighbor who babysits for our kids and I went onto facebook to update the interwebs on what was happening. Within minutes, I had offers to help watch Augie while I went to the hospital.One friend was on her way out the door when the neighbor's mom knocked on my door. I had never been so happy to have social media and cellphones at my disposal. I ran around the house, packing clothes and stuffed animals and books and toothbrushes. I left my neighbor in my house with my sleeping son and went to drop off supplies for my husband, not me, to stay the night in the hospital with our daughter.

We decided it should be him, not me, for one reason: he can sleep anywhere, and I can't. That was it, nothing more or less than that. Upon arrival, the same woman came at me with forms to sign and I had to say "Look. He's staying. Not me. I will sign, but he's the one who should've received this form." She seemed both surprised and, to be honest, judgmental of me for not staying.

Luckily, momma don't have time for that kind of crap.

Lenny was crying under her oxygen mask, realizing she had to stay, that she couldn't go home. She was scared. It broke my heart.

And that is what always breaks my heart--fear, in myself and in others. I can handle my own pain and I can even handle my children's pain, though it is hard to witness. I can use my practicality to get through a situation. But witnessing fear will get me every time. Fear is just the mind's way of admitting to a stark reality that we normally don't allow ourselves to admit to; fear is always fear of death, always, no matter the form it takes. Fear means the person knows what is coming and wishes she didn't know. And you cannot assuage fear; you can only rub her back and say "I know, honey, I know. But you need to be here, because you're sick. You need to be here to get better."

Eventually, she was given a room. And then I was glad to be there--I asked the neighbor for some more time, because they asked for all this extensive medical history that Gabe might not have been able to answer. I got frustrated when they asked what Lenny's birth weight was and I answered 6 pounds, 3 ounces. Was she full term? She was a week early. But I was two weeks late and weighed six pounds six ounces. We are not big people. She is not sick because she is little. The child is never sick! And the nurses glanced at each other as if I was one of THOSE. When Gabe said she had been prescribed Zofran (as a precaution--she hadn't taken any) for vomiting, and I said I would rather she didn't take that, the nurse looked at me with pity and explained that Zofran is well tolerated by everyone. Well, not by me, I said. I should know, because of chemo. I needed these people to know that I was almost as comfortable in hospitals as they were, and was not afraid of the environment nor convinced of their superiority. No one can advocate for a grown woman but herself in a medical situation, and no one can advocate for a child but an adult. Now, I liked the pediatrician, though she was very formal and clinical, but I made sure to ask a lot of questions before going home. I felt satisfied with her care. I finally left.

And then it began, the hours of texting, the back and forth, the gin, the restless sleep, the acknowledgment that the breast cancer walk that you had raised money for and recruited team members for the next day was only relevant because it required you to park blocks away so you could leave your house in the morning to visit your daughter in the hospital.

I did not know how to sleep in the house with half my family not in it. I'm the one who travels. I'm the one who stays in the hospital. Everyone else sleeps at home. If Gabe is not in bed with me, it's because he's staying up late, putzing around in the house somewhere. It was strange to think that he wasn't there at all. And Lenny? She has only had one sleepover in her life. Augie and I ate breakfast quietly, which is rare for him. He was cooperative, also rare. Even though it was Mother's Day, other families offered to watch him, as he was not allowed in the pediatric unit where Lenny was the only patient.

By the time I got there on Sunday morning, we knew Lenny had pneumonia. Specifically, atypical viral pneumonia. She had some evidence of a UTI and potentially strep throat as well, though the rapid culture was negative. How the hell does all that happen all at once to a healthy child, I asked myself.

And then, then I hated myself. I am the last person who should ask that question. I am the last person who should have doubted Lenny's insistence that she needed a doctor, yes out of the blue, on Friday night. Aren't I the one who was smart and healthy and curious who nonetheless was having 100 seizures a day at age 6? One day I was fine, the next I was having CT scans of my brain and being prescribed harsh medication and learning that life as I knew it had changed. One minute I was walking home from school, the next minute I was almost dead and would need months to learn to walk again and would face lifelong physical limitations from that car accident. One minute I was working out and nursing my happy baby, the next I was diagnosed with an aggressive cancer. I of all people know that health is random and fleeting and can be taken from you at any time.

My daughter knew and I should have listened to her.

She could have stopped breathing in her sleep. It was physically painful and next to impossible for her to breathe. Once I understood this, I could handle what needed to be handled. Gabe got emotional, didn't want to watch them fail to place her IV, but I could handle all of that. It needs to be done, that's what she needs. He was all, my poor baby! and I was all, let's go. Let's take care of this. He was pacing the halls and nervously not knowing what to do with himself while in the hospital, I was playing solitaire and eating the leftover lemon ice. Lenny seemed to prefer me being there during the day, and her dad being there at night. That's not entirely true, in that she shrugged and said "doesn't matter" when she was well enough to answer us when we asked who should stay with her.

Some mothers would not be able to stand not being in the hospital with their child. That's not me, though. I hope my kids like us both the same, even if for different reasons. I hope my daughter doesn't see her father as inept and expect me to be the one who has to nurture her, because I would hope she would know we both can and want to do it and have chosen each other in part for that reason. I want my son to know that while his sister was sick, one of us would figure out how to care for him.

It took longer than we expected for her breathing and heart rate to regulate. My Mothers Day was a mess and all I wanted was for my kids to be home, to be together. Augie had wanted to bring me breakfast but didn't know how to do it by himself. Lenny had wanted to see her friends at the breast cancer walk. Gabe wanted to be romantic for me for Mother's Day.

Oh well--the best laid plans.

People were so worried, and I felt the need to give updates when possible. When I walked out on Sunday morning, our neighbor opened the door and came straight over asking "how's Lenny?" We have great neighbors. Three of their children have watched our kids regularly and we have leaned on them for emergencies. But we don't talk much, we don't hang out together. I've talked to this man a handful of times. I nod to him when he's mowing the lawn and talk to him if we have managed to catch the same train home. As I told him the story, he asked how Gabe was doing. I told him he was restless, worried about doctors sticking needles in his daughter. He said "poor guy. He must be a mess. He can't even sit still here, in the yard. He's always running around like crazy. I can't imagine him in the hospital while his little girl is in there."

And how could he know that that, and only that, is what would make me cry?

I came in the house and wiped away the two Katy-style tears. My kid was in the hospital and I was scared and sad for her. But I didn't cry. I didn't cry until this man made an offhand comment that let me know that he sees my husband the way he is, as that manic stir-crazy somersaulting dad, that he could picture him pacing the halls in the hospital before I told him that's what he was doing. The way that people see people, the way humanity seeps in and leads to a moment of empathy and grace--it takes me by surprise and just gets me every time.

And that moment of clarity led to another. As I thought about my neighbor, I suddenly was brought back to something my mother said to me right after my recurrence, when she said she thought she might want to talk to a therapist about my cancer. I understood, told her it made sense, but this was something that was always possible, this was a terrible thing but not a surprising thing. She said she knew that, but knowing the reality of things didn't make it easier. She said she had experience with worrying about me and my health and my life but that didn't make it easier. After all, she asked, didn't I understand? She said: "You're my Lenny."

And I got it, but I didn't, but now I do.

I've gotten used to what I've needed to get used to in my life. I can't get used to the notion that my kid could have stopped breathing or that she will ever stop breathing, even though I live in the same real world as you.

Lenny's home. She can breathe. Her heart is working. She can go to school tomorrow. She is the same. Hell, she was the same in the hospital, asking me to bring her homework even though she couldn't use her hand with the IV strapped to a board taped to her fingers. I wish it had been me, not her, in the hospital, as it usually is, but wishing something doesn't make it so, and it doesn't help. I can see that now--the way my mother saw me as a child. I wish I didn't have to see it, but I do.

Lenny's home.

Monday, May 4, 2015

Day 1,695: Five Years

Five years ago, I began a countdown to today.

It wasn't that simple, of course. There were many shorter countdowns. Time laid before us in pieces. I got through surgery, surgery again, this chemo and that one, radiation, menopause, mammograms and follow-up visits. Each birthday, mine and my families', was a milestone of sorts or a reminder that everything is fleeting. Each holiday was marked: the first holiday since, the third holiday since. Everything was "after," everything was supposed to be acknowledged as time we might not have had.

Time is always time that we might not have had.

This is me a few weeks after learning I had cancer, and this is the last picture taken of me and the kids before my diagnosis.

But in the world of cancer, five years is put before you like it is everything. When statistics refer to "survival" for various types of cancer, they do not refer to the likelihood of the patient living a long and storied life and dying at 90 of heart failure. The "survival" statistics refer to five year survival rates. Living beyond that is apparently gravy if you have had cancer. That is a tough reality to face if you are diagnosed with cancer at age 34. Who wants to think that living past 40 is impressive? However, getting to that magical five year point can mean you get to use the word "remission" to describe your cancer.

But...there is no remission for breast cancer. There is only "no evidence of disease." That is another way of saying "you might have cancer, never can tell."

If you like data, as I do, you might look into the survival rates and begin to understand what lies within them. There is survival, and there is "disease-free survival," which means you are not only alive five years later, but your cancer has been MIA that whole time. And so it is that when the statistics gods and the cancer organizations are rounding up the numbers, they can include me in one category of survival (because I am not dead) but not in the other (because my cancer came back). I am not the worst case scenario, but no one is trotting me out as a success story, either.

I don't want to be seen as a story of success or failure, at least not when it comes to cancer. My five years since diagnosis is important, at least to me, but not for the reasons you might think.

On the one hand, many, many people with cancer do not make it five years past diagnosis. I will never know why I am one of the ones who has made it this long, and I will not know if I will make it out of this cancer mess in general until I've either made it or I haven't, whatever that means.

On the other hand, if you strip away the cancer-related things, there are things that have happened in these five years that I'd like to celebrate. I have spent a lot of time in cancer treatment or recovering from cancer treatment or surgery. I have become more isolated, both by my own design and because some people became weary or wary of me, especially the second time around. I have changed, I suppose. I don't have the same body or the same hair or the same concentration or the same tolerance for people and things.

Cancer has happened over these five years and then it happened again.

But. Other things have happened. Five years means a lot to me. It means

my son hiding in corners soon after learning to walk; a black bear and her cubs looking at me when I thought I was alone in the woods; my daughter taking a video of me learning to ride a bike; learning to hold a plank on one arm; learning how to row a boat; learning; my husband singing "you make me feel so young" on karaoke night; the love held within a Bic and a can of Barbasol; the soft voice of a scan technician I would never see again; my twenty year struggle with birth control politics; not wanting to ask my son to give up his pacifier; my daughter acknowledging I will always be her mother, even when I'm dead; my son saying he wished we didn't have to die; a man I loved for years and a woman I had never met before taking pictures of my naked body; my daughter memorizing all of the lines for all of the parts in the preschool production of Wizard of Oz; my son becoming both impossible and good at everything; my mother telling me a joke about Emily Dickinson's chicken; my gynecologist telling me he loved me; an eagle circling over my paddleboat, trying to decide if I was worth eating; people I had not seen in 20 years who were so honestly happy I wasn't dead at our high school reunion; a man in our neighborhood working in his garden and handing my husband his yard's best flowers--for me; overcoming my fear of heights; waiting for an elevator; all of the unsolicited advice I've given to teenagers; my kids pretending to believe in magic they do not actually believe in, though oh how they want to; my kids learning to do seemingly everything; reading a letter to my daughter in front of hundreds of people on a stage; driving over bridges; meeting the woman who saved my husband's life, though he hadn't known he needed saving or that she existed; 100 million year old dinosaur footprints; taking my old hair out of a box and thinking, better it than me; the waves of Lake Michigan breaking over our bodies; the visitors from Europe who swore Lake Michigan was an ocean; the panic of getting a flu shot in the "wrong" arm; going through puberty...again; skipping rope; spinning; a cold that was just a cold; my husband falling off his bike while riding to the dentist's office during a blizzard; my brother turning his face away when the surgeon had me sign the breast he planned to amputate, to make sure it was the correct one; the cardiologist who cried; taking a new job in another state right in the middle of it all because hell why not; my husband comparing his vasectomy to a production of CATS; trouble breathing; hands; my mother admonishing those who find guilt to be a useful emotion; the woman in the filmstrip from the 70s who picked up and cut melons with her feet because she had no arms; the purpose of adolescent memories and fumblings finally becoming clear; power and freedom; health privilege; ghosts; hoaxes; resting my legs on my husband's lap in a crowded movie theater; dreaming that my son impregnated his college girlfriend; an albatross and a sunset; all the women in all the waiting rooms; swimming; doing things anyway; walking away.

The above is just a snapshot of some of the things I have written about in this blog, just words following words, of what five years means to me.

Five years of these words tumbling out, words about the things that happen and the things I think about and the things I might never witness and the things I have been lucky enough to see people do and hear people say.

When my gynecologist saw me this week, he asked me how long it's been. Five years, I said, almost five years. Not quite two since the recurrence.

He nodded. Right, he said. We're getting there.

Five years of survival. Those are words to add to the words. All of these words, that took five years to say.