breakinglight11 | Entries tagged with cancer and cancer and cancer

I have talked about my mother’s death here before. But today, on the one-year anniversary of her passing, I want to talk about the night she died. I don’t have much point to make. This is a very disjointed, stream-of-consciousness entry. But I’m ready to talk about it, and I want to have a record of what it was like.

Casey, Sarah, and I drove down together. We came home into a very clean house—partially, I think, for all the people who would be coming in, and partially as way for my dad to feel in control. He’s a strong man— believe me when I say almost impossibly so —but he channels stress into things like that. He had food waiting for us. And he took us upstairs to see Mom.

They had put a hospital bed next to the big bed in their bedroom. That was good, she hadn’t wanted to die in the hospital. She wasn’t conscious; she was on a sort of liquid morphine that basically knocked her out. They put her on oxygen, but it wasn’t doing much good, and she kept gasping, trying to breathe. She couldn’t, really, but her body would try to anyway.

Dad was so in tune with her condition, with everything he’d done to take care of her. He’d called the previous day and said it would happen very soon. And we went home the next day, because he was right.

He asked if we remembered the part in Harry Potter with the thestrals, which are only visible to you after you’ve seen someone die. “I think we’re going to see thestrals soon.” He’s not usually one to talk in literary references, so that one struck me.

A hospice nurse came and spoke to us. We were kind of normal and together, which I think surprised them a little. But we don’t act out in front of strangers. I was proud, though, when the nurse took a moment to tell my dad how impressed they all were with how my dad took care of her. She actually said she’d never seen anything like it. He is strong, and he loves her.

It was very surreal. How normal it was, while Mom was right there dying. Mostly it was waiting. We’d sit with her for a while, holding her hand, talking to her. My dad and my brother had a lot to say. How much they loved her, but how it was okay for her to go, that she didn’t need to hurt anymore. Neither of them have ever been afraid of or uncomfortable with their emotions, but their frankness and their verbosity impressed me. This process made my brother a lot softer. And my dad, well, he’s perceived by some to be a hard, intense man. But he loved my mother utterly. Reordered his whole life to be there for her in her illness. And damn certain he was going to tell her everything as she died.

Dad told us stories of how they met, when they were young. How they were friends for years before they ever dated. How after graduation they traveled cross country to Yellowstone National Park in a van with three other friends and a German Shepherd. How they were camping in the park, smoked some weed, and went swimming at the same time there happened to be an earthquake, but because they were high, they weren’t sure if they imagined it or not. How my mom said to my dad, “If you grow up a bit, you might be worth keeping.” It made me smile to hear all that. Funny to think of my straight laced parents being cooler and more adventurous than me.

I just cried a little, quietly. Weirdly, I found I didn’t know what to say, and felt too embarrassed to try. Words are supposed to be my thing, and I didn’t have any for my dying mother.

It’s okay. She knew how I felt, and she couldn’t hear anything anyway. But it was weird.

So we sat with her, listening to her try to breathe. Then we’d get hungry, or have something to do, so we’d wander off and do it. Dad had a little camera set up in the room, so we could watch her from the kitchen. In case it happened, we could rush up and be there.

She looked like a scary troll. I feel awful about thinking that, but she did. Not like my mother at all. Her hair was gone, her face and body were bloated and stressed. She had tubes coming out of her all over. Horrifying. The picture of death.

We took a picture of her. Not sure why. I guess because it was real, it happened, and there’s no pretending that it didn’t. I have it and Casey has it, but my dad asked us not to show it to anyone. It’s private. It’s the last picture of my mother on this earth.

Casey’s girlfriend Sarah was with us. My family is private, intensely so, so it was a question as to whether or not she would come for this part of things. Bernie was working, so in deference to both of those things I had chosen not to bug him until there was actually a funeral. Dad probably would have been okay if Bernie came. Though in fairness he hasn’t known Bernie as long. Casey and Sarah had been together for like six years then, and he wanted her there, and Dad was fine with that.

Sarah was so good. The whole time I couldn’t imagine how awkward everything had to be for her. Being in the middle of other people’s uncomfortable, private, tragic moment. But she was perfect, being present and quietly, lovingly supporting my brother. I have so much respect for how she conducted herself in what had to be a deeply difficult situation. I already liked Sarah, but that was when she became family.

It was late when it happened. When the life finally slipped out of her. Her breath, already choppy, became more and more infrequent. She twitched for a while. Then she was still.

I posted on Livejournal when it happened. And Twitter, I think. That’s probably kind of sick that I even thought of it. But I wanted to mark the moment.

Dad called the hospice. They would send the right people. So we waited, there in the bedroom with the remains of Mom. I had been laying on my parents’ bed, right beside her hospital bed. I stayed there, staring at her as she went cold. Her skin became so gray, that weird troll that replaced my mother.

Nobody came for a long time. Everyone curled up someplace and slept. I don’t know where everyone ended up. I think Casey was on the floor. I slept there beside her. It didn’t seem strange. She was either a sack of dead disease, or she was my mother. I’m not afraid of either.

The hospice nurse came. I dragged myself up, sat in a chair and was polite. Same as I was with the nurse the previous day, be nice to the stranger, have good manners, even if you just lost the most important person. She asked for all mom’s medications and destroyed them. She was decent and said nice things, but I don't really remember what they were.

Two men in suits came from the funeral home. My dad remarked how weird it seemed to come ready to move a body dressed in a suit, but I guess it was supposed to be gesture of respect. They were very careful gathering her up, zipping her into the body bag. I watched them do it, which likely made them take extra pains, but honestly I didn’t care. In that gray shell there was more remaining of the cancer that killed her than there was of my mother. What did I care what happened to a dead sack of tumors, when the person who bore me, raised me, loved me, made me who I am, was already gone forever?

I went to my own room and slept. The next day, I stripped the hospital bed, washed the clothes, made up the guest bed. They were the only sheets we had that fit it. Bernie and I slept that night on the sheets my mother died on.

I mention all this because it feels like it should have been weird or creepy. But none of it was. At least not to me. I just love her, and miss her, and I still don’t quite believe she’s gone.

Spoilers ahead for Mad Men season 7. Sorry.

Betty Draper died of cancer. And I don’t know how to react.

Lung cancer, of course. It was on Mother’s Day. I wasn’t especially bothered, even though it was the first Mother’s Day without my mom. I don’t miss her any more on some arbitrary day than I miss her any other time. But on Mad Men, the one that aired last night, Betty Draper got diagnosed with cancer and got ready to die. And… I don’t know what.

I don’t know why it should strike me so. Betty and my mother were very, very little alike. Betty was cold, childish, and petty from an abusive home, while Mom was warm, selfless, and strong. Betty was everything my mother was trying to escape by leaving the tiny town she grew up in and distancing herself from her own mother, who was loving but still kind of self-absorbed and small-minded. But still. But still. It’s all tied up, somehow, my mother and Betty and the women of Mad Men. A similar culture shaped her. Taught her to smoke. For everything she did to move past it, it still infected her with the constant fear that people would judge her for not being perfect. Just like Betty.

I remember how thrown I was seasons ago when Betty gained all that weight and the possibility of her having cancer then was raised. It tweaked me because of how Mom’s cancer put sixty pounds on her. Two shockingly beautiful blonde women completely physically changed by the specter of sickness. It’s stupid, but it always seemed like people as beautiful as they were had some sort of armor. To see that armor taken away showed just how vulnerable they were. So vulnerable that eventually they died. Sally’s mother and mine.

I don’t know. Sally is my mother, not Betty. My grandmother was closer to Betty-- and she died of cancer too. But now Sally has become me. I become my mother.

Don't know why this is on my mind today. But I'm writing it here for the record.

My dad never gave up on my mom. He was the one who was chiefly responsible for taking care of her as she got sicker and sicker, and he was utterly devoted to it. Mom's healthcare people said they'd never seen anything like it. They must have been doing something right, as Mom got five and a half years with a cancer that basically has a zero percent six-year survival rate, and I think that had a lot to do with it. He saw what was happening to her more clearly than anyone, especially as she declined, but I admired the fact that he never gave her up for lost.

I kind of did, I'm ashamed to say. Not, fortunately, in any way that really affected how I treated her. But I remember things that suddenly seemed pointless because we knew she would be gone soon. Like, when her last birthday came around in March. I thought, should I even bother getting her a birthday gift? It's not like she cares about stuff at this point. She basically can't enjoy it. Is it worth it to bother?

But my dad never did that. I remember when she was diagnosed with her brain tumors and it was fairly certain that she had months, if not weeks, to live. He ordered the same cord of firewood he always ordered for the winter, because Mom always liked to have a fire in wintertime. Even though she probably wasn't going to live long enough to enjoy it, even though it was pretty much solely for her benefit, and he would have to be entirely responsible for the considerable amount of labor and trouble it involved. Because she liked it, and he never gave her up for lost.

She stopped eating in the last several weeks before she died. It didn't really matter at that point whether she ate or not, it was clear she was on her way out. But he never stopped trying to get her to eat. The hospice nurses said to give her cookies or ice cream. He said, "But she's not getting any nutrition." They asked him if he understood that she was dying. Of course he did. He just never stopped trying to take care of her.

Same thing with her pain meds. We're a somewhat pill-averse family, and they avoided her strong pain medications as much as they could. Again, the nurses questioned whether they understood how dire the circumstances were. But the pills made her sleepy and spacey, and they wanted to be able to still talk to each other. She only had a few days before the end when she could no longer communicate, and dad said one of the hardest parts was "when she stopped talking to me."

He never treated her like a dying person. They had all the same conversations, arguments, and jokes they always had. And he made sure she stayed as strong as she could under the circumstances. I love that he loved her like that.

I could talk for ages about the woman who was my mother. Things you probably already know. Her kindness, her grace, her intelligence, her talents. I could go on forever. But standing up here now at her memorial, you know what I can’t get out of my head?

This isn’t fair.

We shouldn’t have to be here. We shouldn’t have to be mourning her loss so soon, from a sickness that made her suffer so much. When talking of cancer, there’s no such thing as deserts, but God, there was no one who deserved to go through that less than she did.

Because she was so good. Every thing I try to be, I try as an unformed imitation of my mother. From the way she threw a party or baked a pie, to the way she picked up a new skill seemingly without effort, to the ceaseless kindness and forgiveness she had for the world. Anytime someone notices that I’ve managed some small effort in what she taught me, I can only think, that’s nothing. You should see how my mom does it.

We were blessed in many ways, and one way that we were a close family. There were no old wounds between us, nor any important words left unsaid. But there was so much more life for us to have together.

For my part, I haven’t yet done all the things I’m going to do, things I wanted her to see, and be proud of me. I wanted her to see me get married, and help me raise my children. I wanted to learn how to be the kind of mother she was, because who else in the world could teach me that?

I know that her passing came as the end of her suffering, and she’s with God as she was always meant to be. But she should have had it all—she should have had that, and the rest of her life. And I am so angry that she didn’t get it.

But such is life. Such is the world God made for us. And we are not children, who may hurl ourselves in rage against the things we do not like.

So what then? What do we do? In times like this, people often encourage us to find the good that can be taken. As if, no matter how dark circumstances have become, there’s just some good that’s just there, and all we have to do is see it.

But I believe that in times like this, there is no grace or blessing that’s handed us to. If there’s any good to be taken at all from being eaten alive by cancer before your time, it’s up to you to make it. Because you don’t find it— you make it. And my mother did.

The burden laid on her was enormous. It would have been an easy thing for her to lapse into self-pity and despair, or to just give up. But she never did. She still took my calls ever day and listened to me go on about the silly details of my life. She still used her many creative talents to help me with my projects whenever I asked. She stayed the person that she was always was, as selfless, as giving, and as strong. She stayed my mother.

She loved to say to me, “You don’t know what you can do until you have to.” But every day, she had a choice. And every day, she chose to carry on rather than give up and let it make her less than she was. She didn’t allow her suffering to be the end of all joy and hope and goodness in our lives. Because she loved us. She held on to that for us.

That is the good she made of this. She allowed us, her family and friends, to see what that kind of strength and grace and love looked like. What a gift that was! I cannot doubt it, can never believe that it’s not possible, because I saw it with my own eyes.

It isn’t often that we get the chance to really show our quality. There aren't many chances given to be a hero. To show just how deeply you love. But in times like these… it reveals you.

So I will look to that in the years to come, in the darkest moments when I won’t have her here to turn to. I will think of my mother, and how much she endured to show me what real love was. I will think of my father, who took better care of her than anyone had ever seen, all because he loved her. There is Christ in those things. And that will be what carries me through the sadness and unfairness of having lost her. It has put iron inside me, which I hope one day will be forged into my mother's steel. That’s the good I’ll make of this.

The house was very, very clean when we first came in. It was always extremely clean when we were growing up, but it's spotless. There are, and will be, people coming in and out, and Dad wanted it to be presentable. Honestly, I think it's also something he can control.

Mom is upstairs, in the medical bed the hospice brought. She's not really responsive right now. She's on oxygen, which isn't really doing anything, and morphine, which is the only thing keeping her comfortable. The way her skin looks, the way her breath rattles and comes in intermittent jags, makes it clean that it could happen at any moment.

We're just kind of hanging out with her. Talk to her, holding her hand. Watching. Wanting to be there when it happens.

Dad asked me if I remembered the scene in Harry Potter where Harry sees the thestrals for the first time, because you can only see them when you see death. I knew he'd read the books, but it surprised me to hear him make that sort of reference. But he said, "I think we're going to see thestrals soon."

My dad called today to say that my mom's nurses think that it is very likely that she will pass in the next few days. It's hard to say these things for sure, but she's showing all the signs of multi-system failure, and while there is a possibility she could linger, my dad, who has been right with her through every moment of her illness, thinks he can see her slipping away. So my brother and I are pushing up our next visit and going home tomorrow morning. Just to see if we can be there at the end. It's going to suck, and she's on enough pain medication that she may not be lucid, but we're going. We'll be there if now is the time.

I resolved when I broke up with Jared that I would stop hiding how I felt so much, stop pretending things were okay when they weren’t. So I’m going to subject you to the dumb bullshit about how I’m feeling. Feel free to skip if you don’t want to hear. I wouldn't blame you; I'm sick of it myself.

At a very low ebb. Feel so off these, even when I’m mostly doing normal. Seeing how badly Mom is doing just makes me ache. How weak she is, how much help she needs, how much pain she’s in, how she’s sometimes muddled and off both from the painkillers and from the tumors pressing on her brain. It makes me so sad that all the other rough things in my life right now seem beyond my ability to handle.

I’ve come to dislike the term self-care. I know what it’s supposed to mean— making yourself and your wellbeing a priority —but I’ve come to associate it so strongly with people blowing off responsibilities that it raises my hackles a little every time I see it. I would rather feel a little worse than be the kind of person who doesn’t fulfill the commitments that they make to other people. Than for people to feel like they can’t count on me.

But I am overwhelmed. And I don’t know how to ease it. It’s mostly my own fault; in order to feel relevant and like I’m doing something worthwhile with my time when I’m low, I always load myself up with projects. It makes me feel like I’m actually doing something toward making the career I really want. That, and I am so prone to laying down and sinking into nothingness that I need occupations to stave it off. But I have so much difficulty concentrating under this stress that I struggle to get anything done. And so much is due, so much is expected that I’ve committed. And I know I would feel even worse about myself if I didn’t deliver.

How, then, can I take care of myself?

I want to hide, to seek refuge in quiet and solitude, but I can’t. My job, tutoring students in paper writing at Bunker Hill Community College, requires I see and talk with lots of new people every day. While I do fairly good work at it, I find that much human interaction to be extremely exhausting. It’s a good job, though I don’t get many hours, but that part of it stresses me out extremely. It seems like it’s been more so lately. Probably just because I’m so stressed by my mother’s situation, but I’m starting to worry that the wear is cumulative. Which means it would only get worse. But I have to do something, and I’m terrible at finding new jobs when I need them. I guess I have to hope this is only temporary.

I feel like I’m been slow and forgetful lately. Responding to things, remembering the things I have to make sure I get done. And every time a new responsibility hits me, I wonder if it’s going to be what topples me. When one of my roommates told me she’s leaving in a month, the thought of having to find somebody to replace her made me dizzy.

I worry about money. It’s gauche to talk about it, but it’s on the list. Now that the winter finally seems to be breaking it might not be an issue anymore, but the heating bills were absolutely killing me. I’ve been a touch behind for months, even with my careful budgeting. It’s so tiresome to expend so much effort being careful and still not being able to make things stretch. I guess I have one real monetary indulgence—I spend a probably ridiculous amount for my budget on my various workouts. I take two ballet classes a week, plus I attend two group circuit workouts with a trainer at a little gym in Waltham. It adds up pretty fast. But I get so much out of it. I love learning to dance, my body has never looked or felt better, and I think it does so much for my health. If I feel stressed and worn out now, I can only imagine what condition I’d be in without it. If I could just make myself do it myself—practice ballet myself for an hour and a half, go through the circuit routine on my own at the gym —I’d save a ton. But I have a hell of a time making myself do it when I don’t have an appointment with somebody to put me through the paces. I feel like the money’s worth it to me, but I suppose it’s stupid for me to complain about things being tight when I’m making a choice that makes it so.

I suppose I should be grateful. I remember when I was dealing with this sort of thing with the black cloud of Jared hanging over my life. Nothing sucked the hope or energy out of me like he did. Thank God that weight has been lifted; I don’t feel like I’m a breath away from sinking all the time. But I could use a victory. Something nice to happen to me. A success of some kind, a step forward. I know that won’t make up for what’s happening to my mother. But it might help me not to break down and lose hope.

Going home again this weekend, and again, not looking forward to it. Dad says Mom is fading fast. I know the hospice people came by the house last week, and though they didn't exactly tell me what that means, I can only conclude that it was to make whatever preparations necessary for Mom to die. Again, not sure exactly what those preparations might be, but it's a depressing thought to go home to.

Not to make it all about me. I'm not the one who's dying. I want to be there for her, so of course I will be. But it's rough. Trying not to let it drag me down, but not entirely succeeding.

I hate that I'm so fucking fragile. The rest of my family meets it head on a lot better than I do. I feel avoidant and cringey just thinking about it. But it's not about me.

My mom called me. She never calls me. I call her every day, but she prefers not to bother me. But she called me today.

She finally got the word. There's nothing more they can do. The doctors have tried every treatment there is, some more than once, and they're giving up.

She was always doomed. We knew that. But now it's just a waiting game. No more sick treatments. Maybe now they call fill her full of drugs that can make her breathe easier and have a little more strength. Maybe it won't be so miserable. I wonder how long it will be.

Well, my visit home was about as rough as I expected. Mom is in bad shape. She's been in really bad shape before and bounced back, but I just have a feeling of doom this time. I think she's going to slide down from here. I'm scared what that will be like. She so doesn't want to become helpless.

Feel really down about it. Nothing else to be done.

*Sigh* Have to get up early to go home tomorrow. Not looking forward to it, honestly. The six hour drive is not fun, but I'm worried about what I'll find when I get there.

My mom isn't doing great. It's never quite so clear over the phone, as she doesn't like me to know when that's the case. But when I'm at home I'll see it firsthand. It's hard. I love her, and I love being with her-- God knows how little time I've got left with her --but it's hard to see her when she's struggling so much. And it's not like I'm much help. There's nothing I can do, which makes it worse.

I can be there, though. She wants to see me. I want to spend time with her while I can. So I'm going. Maybe we can just enjoy each other's company and not only dwell on the progress of her disease.

Mom had a bad CAT scan. Her lung cancer has not only grown but spread. It's in her adrenal gland, her lymph nodes. And her brain tumors are back. Can't repeat the big treatment again. There's so little left that she hasn't already tried. Anything they do now is a shot in the dark; they don't know what to do at this point. Going to spread more and shut down. Lymph nodes is bad. Lymph nodes is a death sentence.

Of course it's all a death sentence. Feels almost silly, melting down now. She's always been under a death sentence. We were sure she was doomed two Christmases ago, and here she is a year and two months later. We should be grateful. She got five years with the deadliest cancer there is when her initial estimate was four months. We should be grateful. What did we expect? THAT'S CANCER. What did we fucking expect?

But I'm not grateful. It's not fair. We expected her to have a full life, to get old and see us get married and have kids and succeed in the world. Not get eaten alive by sickness. Now's when she's going to get dragged under. I know I've said that before and we had miracles, but she's got no strength anymore. Not after five years of the chemo and the drugs and the creeping sickness.

No, that's not quite right. She's proved so physically tough that she won't even have the mercy of going quick. Her body is probably going to hold on until she's a wasted wreck. She's going to get so weak and sick and helpless and it's going to be drawn out and she's going to hate it and be miserable and it will be awful.

"Oh, but tenderly, tenderly, Lord. Day by day and week by week you broke her body on the wheel whist she still wore it. Is it not enough?"

When is it going to be enough?

My mother got the results of a brain scan today. We were on edge all week waiting for it. If she got a bad result, things would be really bad, because the treatment she had can't be repeated because it causes brain damage in excessive amounts. There's not a whole lot left to do if her lesions start growing.

We found out today that all of her lesion have either shrunk, are shrinking, or disappeared. Nothing has grown. Nothing new has appeared. She got about as good a report as we could hope for.

This won't last forever. Eventually they're going to start growing again, that's that nature of these things. But for now, for a little while longer, she's doing okay. In a condition that they thought would leave her three months to live ten months ago. A condition that grew out of another condition that they gave her four months to live almost five years ago.

In December she will hit five years with the deadliest motherfucking cancer in the world. She is a medical miracle. No other patient in the history of the St. Luke's of Bethlehem, PA oncology department has EVER lived five years with stage four lung cancer. Plus metastasized brain lesions. I wonder how many people in all history ever have.

I know most of it is the luck of circumstances, of biology, and being privileged enough to have the best medical care. But I'm damn proud of her will to survive. Because she does it for us. She's fought for five years out of love for us. And I'm damn proud of my dad, who loves her so much he's with her there every step of the way. She couldn't have done it without him. And without her own quiet strength.

Here's to five years, and every minute more we have.

My mother amazes me. I was just looking back over some old posts and saw the ones from the last time she was in the hospital a couple months ago. She was on oxygen, unable to walk, and I was so afraid we were going to lose her. Now she seems almost normal. Not strong, not really LOOKING like herself, but stable, functional, able to do things. It's hard to know what to think about things. Every time she has a downswing, it seems so likely that we've reached the end of the line. But so far, she keeps coming back to some version of normalcy.

The five-year survival rate for people with stage four lung cancer is in the single digits. We are four months into year five. I wonder how many people in history made it this far, much less manage to lead a mostly-normal life. What is the six-year survival rate, I wonder? Is it zero? Are there literally no people who make six years with this kind of sickness? She has good medical care and resilient genes but she's also brave, tough, intelligent about it all. She hates her swollen moon face and fuzzy chemo hair, but they are the badges of someone who has carried this without it dragging her down yet, who has beat every odd against her. She doesn't like to talk about the sort of thing, it makes her uncomfortable for some reason, but I tell her I'm proud of her. Not many people in all of history, after all, who made it through what she has.

Just got back to Boston after a few days at home to see my family. Casey and I are trying to get home at least once a month, if not more, to see Mom. She's out of the hospital now after a month-long stay, and while she's definitely doing better than she was while she was in, able to walk and not depend on an oxygen tank, things still aren't good. She is as weak as I've ever seen her, though at least she's walking and has a little bit of breath.

Yesterday, on what happened to be her sixtieth birthday, she went in for brain surgery, the kind where they bolt your head to a table so they can very precisely aim a laser to zap your lesions. She's even going to be going back into chemo soon. It's tough on her, but I'm proud of how bravely she's handling it. Unfortunately it's all pretty much a stopgap. She's just trying to get as much time with us as she can, but nobody has much hope of her lasting the year. It is depressing, and it can be tough to stay positive now given how dim the prognosis is. But it's been three months since the brain tumors were discovered, so she's already exceeded the most extreme estimate. I need to appreciate the time I have with her-- she's fighting so hard so that I can have it --rather than getting bogged down in an uncertain future.

At home with my family to visit Mom in the hospital. Since getting in the hospital she's shown real improvement. There are currently no bleeds in her brain, and they managed to dissolve the clots in her lungs. She's talking more, she's sitting up, you can tell she feels better. My God, she's a tough lady. But she's still not okay, she's dependent on oxygen and still so weak she can't stand up on her own. That's a terrible way to be. And it worries me, I don't know if there's any way for her to come back from that. I don't know if it means she's just going to be stuck in that place until something happens that they can't stabilize, or if that means things are just plain going downhill. Mom and Dad say I should go back to Boston for now and plan on coming back soon, so I guess that's what I'll do. I'm relieved she's not crashing right now, but I don't know if we can hope for things getting much better.

I'm sorry I keep posting. But I'm a mess and I have no other outlet right now. And I'm sad and scared and I just don't know what to do with myself. So I post and post and post.

I'm here in my house all by myself. Mostly that's okay. I like being by myself. Sometimes it's all I want when I'm upset. The eyes on me, the pity, can cut into me like knives. But the quiet is huge. My brain is so full of bad thoughts. Have been keeping the TV on continuously to distract me. But even getting my mind off of it feels bad. Here I am, sitting here alone in my house, not sure if I'm thinking too much of my mother dying, or not thinking about it enough. And I'm trapped here by the snow.

It's snowing in Pennsylvania too. Not as bad as here, but it's still a real storm. Will the hospital be okay? Do they have the staff they should when people are scared of the weather? Will they be there to take care of my mother? What if they lose power? What if my dad can't get to her? What if she takes a bad turn in the night and she's all alone? What if she dies before I can get home, and the snow is so bad not even my dad can be there with her?

Bad thoughts. Bad thoughts. Nothing I can do. Can't help her, can't reach her, can't make anything better. I can sit here and stew in it, my stomach churning, or I can zone out in front of mindless TV, conveniently not dealing with the reality that she's dying. Some choice. I can't make the right one.

I feel like my life is falling apart. All the most important things. It hurts so badly. So badly that I am so at a loss of how to deal that I'm doing this. Writing attention-seeking desperate cries like this even though I know nobody can do anything. I hate drawing attention to my inability to deal, I hate being an object of other people's pity.

But I concede. I'm laid low. Enough, universe. Enough.

Mom is in the hospital again. It's bad. It's really bad.

There are blood clots in her lungs, the result of the tumor growing. It never stops, not for long. She's had so many different chemos there are none left to give her. And blood clots call for blood thinners, except there's blood in her brain from the lesions, which blood thinners can only make worse. And she's so weak physically, she can barely stand up. They're trying, they've got her in the hospital to try and monitor her and treat her as best they can. But things are so bad. It would take a miracle for her to recover from this. It probably won't be long now.

Casey and I were supposed to go down to visit not this weekend but the next. But it might be that we just have to go sooner. Christ, I'd go now if it weren't for this damn storm. But all I can do now is sit here, and wait, and think, and pray, and try not to crack. God help us.

My family received some terrible news this past holiday season. I am a wreck, have been for weeks now, and I think I am finally ready to talk about why.

As you may know, my mother's been battling lung cancer for the last four years. Three days before Christmas, she lost function on the right side of her body. She couldn’t use that hand properly, couldn’t stand on that leg, and she seemed a bit cloudy, like she couldn’t think straight. We took her to the hospital on December 22nd. Mom dreads the hospital, after all the time she’s been stuck in them for her treatments, but things seemed bad enough that we had to go. All we could do was get her checked out and pray.

She got a CAT scan which told us what happened. Things were bad. The cancer had metastasized, and she had significant lesion development in both halves of her brain. The swelling was pressing on her brain and impairing her function. The sort of thing that you don’t get better from.

The doctor started crying himself when he gave us the news. Bless him for that. It was a good contrast to the parade of doctors and nurses that day who were content to sashay through as if we hadn’t just had our world blown apart. I can’t for the life of me understand why these people just don’t freaking share information when something this serious happens.

We all sat there quietly for a while. It’s not like we didn’t know this was coming someday. She’s a stage-four lung cancer patient. But now it’s finally come. I started crying very softly to myself. Everyone else was quiet. Taking it in. Processing it. This is my family. What does it say that, of all of us, I’m the one who’s the pussy?

Later I saw that Dad had tears in his eyes. I’ve never seen my dad cry before. He is a tough man. I can't begin to express how much so. I heard he got misty at his mother’s funeral, though I didn’t see it myself. And he says he cried when I was born sick, and when John Lennon was shot. Not quite sure I believe that. But this was the first time I’d ever seen it. The world must really be ending.

I spent a long time just watching them together. My mother and my father. They’ve been dealing with the reality of cancer every day since she was diagnosed. She is tough, she has fought this bravely, tirelessly, has been as on top of her own care as anyone can possibly be, but she’s needed him, she would never have gotten through without him there to take care of her. And he’s done it. Completely rearranged his life to be there for her.

I took this picture of them. I probably shouldn’t have. It was kind of intruding on their privacy. We are private people, and Mom hates pictures of herself these days. I don’t think my mother or father would be completely comfortable with everything I’m sharing here. But… I want to remember this moment. I want to remember what these things look like.

It isn’t often that we get the chance to really show our quality. Most of the time we just get to muddle through our mundane lives, getting by with doing a decent job. Even if you want to, there’s not many chances to step up and be a hero. To show just how deeply you love. But in times like these… it reveals you. It reveals what you really have inside you.

Almost forty years ago now, just before they got married, they spoke to the priest who was going to perform the ceremony. My father spoke to him first, and when it was my mother’s turn that priest said, “He’s selfish. Don’t marry him.” My parents tell that story laughing. It’s not even completely false. My dad has always been the sort of man who does exactly what he wants to do. But I wish that priest could see my parents now. “Now I know why they say ‘for better or for worse,’” Dad said. “But for me it doesn’t feel like ‘for worse.’ I just want to take care of her.”

I’m proud of the man who is my father.

And there's Mom herself. Dad says that he knows there must be some good in him, because he's been loved by the two kindest women he ever knew-- his mother, and mine. I still can't believe how bravely she's endured all this. The pain, the weakness. The ravages of the treatments. The increasing helplessness. The loss of two of her most remarkable traits, her easy capability and her striking beauty. The constant sense of impending doom. When she was first diagnosed, she was told she had maybe six months. She ended up getting four years, so as she said, "This is no more of a death sentence than I ever had." She wants to live, she wants to be there for us, so she keeps going on, keeps fighting. For love of us. For love.

You want to know what love is? Let me tell you. My whole family came down with chest colds that week, my mom worst of all because of her compromised condition. Love is when you’re sitting in the hospital, dying of the tumors in your lungs and your brain, and you save one of the strong Mucinex they give you so you can pass it on to your husband for his cold.

And she's still facing her death with strength and dignity. I have been called strong, but I am only the reflection of the bright steel inside her. I'm proud of the woman who is my mother.

How blessed I am. To be their child. To have seen this. I want to remember what this looks like. What that sort of love looks like. What my parents loving each other looks like, while I still can.

Adversity introduces a man to himself. I wonder if God allows bad things to happen to give us a chance to be good in a way we never could otherwise. I mentioned this to my dad. His response was, “I never wanted to be good.” Of course, that’s probably the point. And whatever awfulness comes from this, however terrible it is, at least I’ve seen this. I’ve seen how much my parents love each other. I’ve seen how good they can be.

It’s a costly gift, one I must treasure. My mother buys it with her life.

They couldn’t give us a time frame on how long they expect her to have. There are treatments they can do, radiation, continuing with her current chemo. But the five-year survival rate for patients with her sort of lung cancer is in the single digits, even without the brain tumors. She could have a few months, six months, maybe a year if we’re lucky. They think they can keep her lucid and stable until the end, which is about as much as we can hope to have. Her doctors are dedicated to helping her. She's always been the sort of person who inspires love and goodwill from others, but having seen how far she's come against such odds, with how intelligent, aware, and committed she's been to her own treatments, how bravely she's taken on the suffering that is part of it, she's made people care that she makes it. So she's still getting treatments, both for her lungs and for her brain. Because it might give her a bit more time with us, a bit more time for those she loves.

I shouldn't dwell on it now, but I can't help but look ahead to what life will be like without her. I can't imagine. How I dithered around, trying to make sure everything she wasn't able to do was ready for Christmas, and was struck by how much she does, so effortlessly, so well, that leaves me at a loss. Everything I've ever done-- from the way I lay a table to the way I go through the struggles of life --has been trying to live up to her creativity, her grace, her selfless goodness, her steely inner strength. What will I do if she's not there to show me how? And there's all the things she's going to miss. If I ever become a successful writer, she won't be there to see it. She won't be at my wedding. She won't help me take care of my first baby. She won't see me ever get past my stupid pride and arrogance and meanness to be the kind of selfless, giving person she was.

We are all doing the best we can. Being loving, be there for each other, as long as we still have her. Our hearts break, but we are strong. We have a good family, we've always said. We have our love for each other. And so we'll get through somehow. I have iron inside me, which I hope one day will be tempered into my mother's steel. But I am wrecked now. I am going to be wrecked for a very long time.

Pray for us.

It's growing back again. My mother's tumor's growing back. Always, she goes in, endures the treatments in all their hell, is all right for a while after, and then it grows back again. This is how it is.

We knew it would happen. It's always going to happen, from now until when she dies. All this awful chemo and radiation and drugs, and it's just going to keep coming back.

Cancer, and cancer, and cancer, C.S. Lewis wrote. I think of it often now. Sometimes I want to dig the phrase into the wall with a pocket-knife. Cancer took his mother too, then his father, and finally his wife.

When I picture her, I still see her as she always was, blonde and lovely and perfect. When I see her in person it's always a surprise. She doesn't look sick, really, but so different... so much worse. When I was home, someone commented on the difference. She pulled out her driver's license, with its photo from before-- from when her face was still pretty and heart-shaped and she still had her long golden hair. Now she is puffy and though her hair has grown back it's so different now, short, darker, wiry. I knew how she had been dreading that moment. The only thing worse was the time that child who hadn't seen her in a while refused to believe it was her now, because "JoAnne is pretty, and has long blonde hair."

It's like a punch in the guts just thinking about it. She told me about it in rueful terms, as if it were just a little embarrassing. If I had been her then, I would have slit my wrists.

In and out. Back in, back out. Her hair will be gone again. She will be sick, weak, tired, and still the cancer will be there. I don't know how she does it. I would rather dig open both my wrists than get sick, get fat, lose my hair, and die anyway. But she does. Coughing up blood and pretending she's fine, that she doesn't get tired, that she isn't afraid. That's what we do in my family. We do not want pity. We do not want worry. We do not want you to see when we are weak.

I think of my grandmother with lung cancer before my mother. My grandmother, my mother, then me. Will we be cancer, and cancer, and cancer? I don't smoke. But Christopher Reeve's wife Dana never smoked a day in her life, and she got lung cancer and it ate her.

All the women in my family get cancer. Both my grandmothers died from it. At least they were old when it happened, and lived to see their grandchildren. Grandma Julia Leone was lucky, her tumor was in a place where she could just have part of her lung removed. She lived long enough to get another cancer, melanoma that time, to come along and kill her. And Gigi, too, Gertrude Roberts my other grandmother, who got breast cancer and pretended she was fine and pretended she was fine and kind of discouraged us from visiting to never let anyone see her sick. And both of them, it spread to their bones and then their bones consumed them from within, just like Lewis's wife Joy Gresham. And just like my mother does, both of them hid how bad it was.

I would do that too. If I got sick, or started hurting myself, or stopped eating, you would never know. You would never know in a million years. Because if I know anything, I know that pity is like knives, shame is worse than cancer, so I know that you can hide anything from anybody if you really want to. You can hide your smoking from your children who lived their whole lives in the same house with you for eighteen years, you can hide it from everyone else for thirty. You can hide your breast cancer from your whole family until you die from it. And why not, because there's nothing anyone else can do, the cancer's going to eat you anyway, so if you're going to have everything else taken from you, your health, your beauty, your family, your life, you might as well die with your pride.

Cancer, and cancer, and cancer.

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All Eyes on Me

"Do you know why heroes boast? Because it makes them brave."

Entries tagged with cancer and cancer and cancer

The night my mother died

Betty, Sally, JoAnne, Phoebe

Dad never gave up on her

The eulogy I gave for my mother

Thestrals soon

Running home for the end

Guess I'd better talk.

Fading fast

Well, that's it then

Feeling of doom

Afraid to go home

Tenderly, tenderly

Five years a survivor

Amazing Mom

Birthday brain surgery

Visiting Mom in the hospital

Cry

No miracles left

"I never wanted to be good."

Cancer, and cancer, and cancer