Wednesday, May 29, 2013

Day 1,071: Today My Son is Four



“The prime purpose of being four is to enjoy being four; of secondary importance is to prepare for being five.” –Jim Trelease

My son turns four today. He is a boy now, no longer a baby, creeping deeper into a childhood that will lead to an adolescence that I still fear I will miss. Every once in a while, I can envision what he will look like when he’s older, or daydream about whether his nutty personality will translate into years of entertainment or danger. I don’t have as much reverse nostalgia as I had in 2011, when the sight of boys of just about any age could send me into an unexpected tailspin of grief, but it’s there sometimes all the same.

I am not one of those mothers who laments the time that has passed. I don’t get wistful over babies or clothes my kids have outgrown or memories of their past selves. Perhaps I would have never been that way, as I am not particularly sentimental. I’ll never know now whether that is the natural state of affairs or the change in perspective that cancer brought into my life. I am the mother who gets this aching feeling when I think about my children’s future selves, the various phases and ages that I can only imagine. I would love to speed up time and see them as adults, safe and secure in their grown up sense of themselves, but of course I don’t want to miss everything as it actually happens.

Reverse nostalgia; one of the side effects of cancer treatment that I didn’t see coming. I don’t know why I feel this more intensely with my son than with my daughter. Perhaps it’s because I am a woman, and I was once a girl, and therefore I can see her in myself and imagine her in ways that aren’t available to me with him. Or maybe it’s because his personality is so extreme and I don’t know how in the hell that’s going to play out over time.

Or, maybe it’s because he was just a baby, nursing happily on my cancerous breast, when our lives turned upside down, and I had no idea back then if I would see him reach kindergarten. Of course, I still don't know that, but the possibility is seeming more and more likely as time passes.

Four is an age that is often overlooked. People have few memories of four. Children aren’t enrolled in traditional school yet. Sometimes, preschool friendships survive into adulthood, but not often. Adults are prone to underestimating the feelings or experiences of kids that age. At four, you are too young to make big decisions, but too old to be immune from the ramifications of small decisions.

What can happen at four that really matters?

When I was four, my mother died. She bled to death internally after an operation. She was resuscitated and brought back to life. She was in a coma for weeks, in bed for months. My grandmother took care of us during that time. There was a huge snowstorm that year that effectively shut the city down, and I walked to preschool through snowdrifts taller than me anyway. When I was four, I stopped sucking my fingers. I could read and write and I kept stats at my brother’s little league games. When I was four, the only decade I had ever known turned over. When I was four, things happened that were important.

When my daughter was four, I was diagnosed with cancer. She spent almost her entire fourth year dealing with a mother in aggressive cancer treatment. And yet so many other things happened as well. I just asked her what she remembers about being four, and this conversation ensued:

L: Oh, I don’t know. That was such a long time ago.
A: But then, if she doesn’t remember, how will I know what to do when I’m 4?
L: It just comes naturally. You knew how to be three, didn’t you?

Ah yes, children don’t understand anything, do they?

My son is so little, and so old. He is so aggressive, and so empathetic. There is a storybook that we read where a bunch of animals have a sleepover, and the owl is left to play checkers alone because he is nocturnal. Augie always says that he would like to be in the story, so that he could play checkers with the owl, and he wouldn't be alone. He wants us to understand that he doesn't feel SORRY for the owl. He understands that the owl might be happy; he simply would like to offer to keep him company.

Augie is the one with rhythm, the one who can’t stop singing and who remembers every lyric to every song he's ever heard, who loves to get naked and ask inappropriate questions about alcohol, the one who looks jealous in a real, grownup way every time he sees his parents kiss. I’ve written about him before, but I often don’t know what to say. His personality is, in some ways, best-suited to short-form writing; Augie is like Twitter personified. He is just something else.

The things he says are just too much. Sitting at the breakfast table when he was 2 years old and could barely speak; he turns to me and says, 19 more years, mommy. 19 years until what? Until I can have a beer. When I asked him why he couldn't just listen, he said, You know I'm three, right mom? I'll listen when I'm six. This is the kid who, at two and a half, when asked what he would ask for from Santa for Christmas, got a really mischievous look in his eye and said: A Mountain. He's always asking about girls, always shaking his booty. Always giving us reason to just shake our heads.

Teenagers and young adults love this child. He steals the spotlight away from other kids, away from our daughter. He uses his cuteness to get his way, with other people anyway, since it doesn’t work for him at home. He is charming and manipulative and devious and willful. He’s funny. He loves animals; in fact he loves them enough to give up his mamas cold turkey so that he could watch the class hamster for the week of his birthday. Last Wednesday, I told him he couldn’t have the hamster come home with him if he didn’t give up his mamas at night. He looked at me and sighed. I know, mom. But not tonight. And he put one in his mouth and held onto the other one and would not budge. Not tonight. And then the next night, Thursday, the night before we were to bring her home, he gave his two mamas to his father, and he was done with them forever, just like that.

.

This one, where do his questions come from, how does he know what he knows? What’s behind those eyes? He will deliberately disobey me, make a mess, take his pants off, start singing and dancing, punch something and start making animal noises all within the span of three minutes. And then, he will pause. And he will ask me a question:

Mom, when we die, who is left alive?

And his father and I will raise our eyebrows, and his father will begin to talk about the memories that our loved ones have of us. I am a mother, so I say this: when I die, you will still be left alive.

And he will sigh, looking at us like we have obviously failed to understand the question.

No, I mean, when we die, who's left? What’s left?

And all we can do is look at each other, knowing that he knows what we know.

Happy four, kiddo. I’m so glad I was here to see it. Here’s to more years of you teaching me a thing or two.

Wednesday, May 15, 2013

Day 1,057: Angelina Jolie and Me

I can't count the number of people who have asked me "what do you think about Angelina Jolie?" Those people are not asking me what I think of her acting skills or her tattoos or her large brood of international children. They are asking me what I think about her discussing her decision to have a double mastectomy because she is BRCA+. My first thought is this: What does that have to do with me? She's BRCA+. I am not. I had breast cancer. She did not. It's strange how people think that if a celebrity deals with something cancer-related, you must just UNDERSTAND each other. On the other hand, moments like these are valuable because they open up a conversation that is much wider than any I or any of the normal run of the mill average Jane cancer survivors could elicit. So here's my two cents on what I think about Angelina Jolie, and then here's my 50 cents about what I think about a lot of other things:

Good for her. Angelina Jolie could be awesome or annoying--I have no idea, and neither do you. But one thing is true: She knows how to use her celebrity to get the word out about things. Her situation is one in which loved ones died from cancer, and she found out she was susceptible as well. She made a decision that she sounds very happy with, and her family is happy with it, and she told people about it in an editorial that is quite well-written. She speaks some useful truths: acknowledging that her risk of breast cancer does not go down to zero due to the procedure, highlighting that only a small fraction of women with breast cancer carry the BRCA mutation, discussing the high cost of genetic testing and giving a shout out to lower-income women who don't have access to it, putting in writing the shocking number of 458,000 people who die from breast cancer each year, saying that most women with BRCA have a 65% chance of developing breast cancer (Jolie has been criticized for saying that she reduced her risk of cancer from 87% to 5%--because 87% is too high a number for BRCA+ women. However, if you actually read the editorial, you will note that she gives the correct percentage for BRCA and then says that her doctors gave the 87% number TO HER SPECIFICALLY). She has been criticized for talking about the minimal scarring, the beautiful results and the quick recovery time. But if she had minimal scarring, beautiful results and a quick recovery time, who are we to judge?

Good for her.

It is not Angelina Jolie's fault that the media, women, breast cancer advocates and everyone else under the sun will use her situation to spread false information about cancer, about breasts, about mastectomies. She told her truth and is using her fame to help other people who might find themselves in her situation. If Angelina Jolie undergoes an ooverectomy and volunteers herself for surgically-induced menopause, and then goes out there talking about how difficult it is to deal with the changes of menopause for young (and all) women, she will reach that Goddess-like state of awesomeness for me. And if she doesn't do the surgery or doesn't talk about it if she does, it is none of my damn business. I am also left to wonder why there were so many articles that asked Lance Armstrong about his testicular cancer, without any of them even mentioning his testicles or lack thereof in the case of the one.

So that's my two cents. Here's my 50 cents.

If you put 1,000 women in a room, 120 of them, give or take, will develop breast cancer in their lifetime. Six of the 120 will be BRCA positive. Those 6 women are important. The discovery of the BRCA mutation is one of the most exciting cancer-fighting developments that exists, because it offers a chance for prevention for some women, but also for this reason: Knowing you are BRCA+ IF YOU HAVE BEEN DIAGNOSED WITH BREAST CANCER ALREADY helps doctors manage your treatment plan. It is also important because it is one small window into the role of genetics and DNA sequencing in cancer. It explains only a tiny fraction of breast cancers, but that is better than nothing.

Many of us have nothing. I am one of the 114. More specifically, I am one of the 18 women in the room with triple negative breast cancer, an elusive and mysterious beast.

We have nothing to go on--we know about a slew of risk factors, many of which didn't present in our lives, many of which do not even apply to our non-estrogen-receptive type of breast cancer. If you are a thin 34-year old non-drinker who exercises like crazy and is busy nursing a baby all day, you don't think you will have breast cancer. And, yet--maybe, you find out that you do.

So, given that she knows that she is speaking about a specific situation that a minority of women might find themselves in, I appreciate Jolie's sentiments for what she does NOT say. She does not say that mastectomy was the right choice or the only one. She says it was the right choice for her. I know other women in the same situation who have made different choices. They were not WRONG.

This relates to one of my personal pet peeves about how we talk about breast cancer. There are so many in our society--including cancer survivors--who talk about certain surgeries or treatment options after a cancer diagnosis as if they are the only right decision. People say things like "I had cancer in one breast but I had a double mastectomy because I'm smart, because I'm educated, because I wanted to do all that I could." The implications there are that those who had single mastectomies or lumpectomies are dumb, uninformed, even lazy. The reality is that breast cancer is complicated. I was told, after a lot of teeth pulling on my part to get the docs to be straight with me, that mastectomy--single or double--would not increase my chance of survival or disease-free life AT ALL. Lumpectomy and radiation would offer the same benefits. I chose to do the latter for a variety of reasons, which I've outlined here before, and I think it is totally reasonable and understandable that other women make other choices. For me, I heard what was under the doctors' admissions of the lack of difference in my chances. My cancer subtype, triple negative, was MUCH more likely to metastasize to a distant area of the body than to recur in the breast. And cancer confined to the breast never killed a single person--not one. If my cancer recurred locally, but didn't spread, I would survive. Mastectomy would not lower the risk of cancer cells that had spread throughout the body. Only chemotherapy could do that, and there was no guarantee that that would work either. In 2010, they offered completely different chemotherapy for TNBC than they do today--but of course, I couldn't know that in 2010.

I have absolutely no idea if I made the "right" decisions, and neither do my doctors, and neither do you. No woman with breast cancer knows that. This disease can rear its ugly head when you least expect it, and that is a truth that millions of us have to live with every day, without knowing if the methods we used worked. We are doing the best we can with the information available to us at the time. As I said to more than one doctor who asked me what I wanted to do, for each one of the literally hundreds of decisions I had to make about my care and treatment plan: "I want to go home."

And that was the one choice that I just didn't have. So let me be the one to say that there is too much emphasis on our POWER over this thing--too much emphasis on what we can control, what is right, what is "heroic."

Let me say this: You are not more heroic or more informed or smarter if you are diagnosed with cancer and get a mastectomy, if you have to do chemotherapy, if you have a positive attitude, if you survive, or anything else. My husband said it this morning: "It's heroic to deal with breast cancer--period." This is not a competition, nor a game.

There are 120 scenarios present in the 120 women who find out they have breast cancer. Some might choose mastectomy in part to avoid radiation or chemo and then find out that they have to do it anyway because cancer has spread to the nodes. Some women undergo every aggressive treatment and surgery under the sun and their cancer metastasizes despite their best efforts. Some women do a lumpectomy and radiation only and live long lives without a recurrence. The problem right now is that we don't know who is who. BRCA provides a glimpse, and that is a great stride that has been made in cancer research. But currently, only 1-2% of breast cancer research dollars go toward understanding metastatic disease--which is the only type of breast cancer that has ever killed anyone. That is shameful.

My personal favorite breast cancer celebrity is Robin Roberts. I admire her not just because she is the first famous person I know of to talk at length about TNBC or because she looks so amazing bald. I admire her for her honesty in talking about the difficult things. She has said things like "There is no remission for my cancer," "I'm not out of the woods," "you have days that are so hard you don't think you can go on," and she has shown, to millions of people, the terrible potential effects of toxic chemotherapy as she fights a potentially fatal blood disease brought on by her treatment for breast cancer. Many women will never go through what she has gone through, but she has given a public face to those who already have.

If I were famous, I would talk about triple negative breast cancer, and the relatively high chance of metastasis. I would talk about being a nursing mother at diagnosis. I would talk about sexuality and menopause and my hatred of pink and of slogans like "groping wives means saving lives" and the seemingly ubiquitous feeling that we are, that I am, just breasts and hair and nothing more. I would talk about what is true for me. I am not famous, but that is what I have been doing in this forum for the last three years. I don't claim to represent anyone else. I have talked about this body, this disease, this experience, this woman.

The thing we should all remember about something like cancer is that behind every positive story of empowerment, behind every happy ending, there is so much suffering, fear and death. It is the least we can do for those who experience that reality. And there are many, many people who understand this--including some who are famous, and some who are not.

The other day at my gym, people were discussing the community walk that raises money for breast cancer treatment at a local hospital. A few women were talking about how big this walk has become--more than 12,000 people participated this year, and it started out as just a handful of women walking down the street. One woman remarked that this was inspiring, and amazing. The other woman, older than the rest of us, with a wizened look on her face that told me she probably knows a lot of things that the rest of us don't know, said this:

"Well there are so many because, Jesus. There are so many."

Sunday, May 12, 2013

Day 1,054: Mother's Day in CancerLand



It's Mother's Day. That means that I'm supposed to write one of these, right? I should write a post less sad and fearful than the one I wrote on Mother's Day in 2010, for example. I don't have too much to say today, however. I had a team for the Beverly Breast Cancer Walk. I surprised the teenage volunteers when I walked up to the survivor booth to claim my ribbon and flower. I nodded at the people in my community who didn't know until today that I was one of "them." I did the normal mother's day things--like eating doughnuts and having too much coffee and spending time alone. My mom stayed over last night and instead of going out, Gabe and I played scrabble with her. By the way, if you ever want to feel the cold inevitability of despair, just play scrabble with me.

There are a lot of reasons that Mother's Day is meaningful for women in general and women who have survived cancer in particular. The day can be filled with a lot of happiness and a hell of a lot of sadness for a lot of reasons. I don't feel particularly emotional about it anymore. Because this forum is available to me, however, I will give voice to some things that make this day different for me.

Mother's Day reminds me:

of the last time I ever nursed my son, on this morning three years ago, because I had just been diagnosed with breast cancer five days earlier and I didn't know if I would have breasts anymore, and I knew for certain that I would have to do toxic chemotherapy that would poison him if I kept nursing. I never thought I would be one of those moms who would nurse a kid for two years. I would have with him, because it was so easy, but I never got the chance.

of the fact that I had always thought I would only want two children, but then I found myself wanting three, but I never got the chance to do that either. It would have been too risky from a recurrence perspective, and since I had two healthy kids already, I had to give up that idea.

of my husband's decision to take one for the team and get sterilized because we couldn't have any more kids, which cemented the decision to not have more children not just for me, but for him in the future, even the future where I might not be here and he might have had the chance to build a family with someone else.

of my grandmothers, one of whom died when I was 17 and the other of whom died when I was 30.

of Gabe's grandma, who died less than a week before I finished cancer treatment and who always seemed to adopt the attitude that my cancer wasn't real, which actually didn't bother me.


of the fact that I have been through menopause and puberty both in the last three years.

of the moms who helped raise me, and the men and women who weren't moms at all but helped raised Gabe anyway.

of the two healthy kids I have that many women who had breast cancer when they were young never had the opportunity to have, because of menopause, treatment, death, or some other reason related to cancer.

of the four Mother's Days that I have experienced since my cancer diagnosis.

of the four I experienced before that.

of the ones I hope to have in the future, which isn't a memory so much as a desire that is similar to the desire of every other mother I know, and yet different, as most things are.

Tuesday, May 7, 2013

Day 1,049: Iron Woman



I think I held up pretty well this week, considering. My three year cancerversary came and went, and I didn't feel much like celebrating, since I still had to get through today--the first time that I had been allowed to go a year between mammograms since the whole mess started. I also had visits with the surgeon and oncologist, so both Gabe and I took the day off of work and my mom agreed to pick the kids up from school. I have been distracted, and last night I snapped at Gabe and felt jumpy and made myself what will now be my go-to drink the night before such procedures:

A "Suffering Bastard."

I mean, if you're going to be in the drink-naming business, THAT'S what I'm talking about--none of this juvenile sex on the beach crap. Alcohol was invented for a reason, and that reason was to drown some sorrows and maybe help you sleep when sleep seems impossible.

But I didn't do anything wildly self-destructive or insane, and I did eventually fall asleep, and then I woke up, and then...

The only detail of the day before the procedure began that will stick with me was this: my undeniable nervousness in the car on the way to the hospital. It's a damn good thing Gabe drives to these appointments. I am always so distracted, heart beating fast, trying to find something to concentrate on in the distance or on my phone, secretly glad that traffic is slow, as the inevitable is thankfully prolonged.

The same nervousness--so hard to explain, even to those who also get nervous at mammograms. I get it. But you know, the very first one I ever had was under very dire circumstances, and the news from it, well...So, waiting, and so so nervous, hating the jackass who left nothing but goddamn YACHTING magazines in the breast cancer ward. Seriously, there's a special place in hell for him. Then, the smiling tech comes over and starts the small talk and asks how I'm doing and I say:

"This isn't my favorite place to spend the day."

She asks what I hate most about it? Is there anything she can do to make the experience better for me?

"Well, I doubt it. Because, you know, I had breast cancer. So I'm never going to like this. Plus my breasts aren't big and the left side still hurts all the time so I know what's coming."

She's sympathetic. And brutal. Mammograms are so dehumanizing in the way they make you contort yourself and the way they treat such a sensitive part of your body as if it is jello for the mold:

I'm sorry but I'm going to really have to grab a lot of tissue here. This won't feel good.

Right.

Ugh, I wince in pain where my surgery site feels like it's on fire. I go back to wait for results. Nervous. Nervous. Phone quickly losing juice. Texting Gabe to let him know I'm done but waiting for the radiologist.

"Ms. Jacob, you need to come back for a few more pictures on the left side."

Heart caught in my throat. Woman, don't you know what happened the last time someone said that to me?

More contortion, more pain, more apologies and small talk and more of me not caring until they can tell me what they found.

Back to waiting. Gabe texting me all the things it could be that they're looking for: calcification, scar tissue, me thinking yeah that and CANCER.

The radiologist calls me in, and again my heart catches in my throat.

It's the woman who diagnosed me with breast cancer. The woman who performed my second ultrasound herself after she saw the telltale circles at 3:00 on my breast on May 3, 2010. The one who performed the initial mammograms, gave me a piece of paper that said there was concern that my mammogram showed a possibility of breast cancer, and offered to do the 7 core needle biopsies herself, on her lunch hour, right then and there. The one who called me to give me the news, whose naturally cracking voice broke on the phone when she told me to find my husband so he could take notes.

She looked at me and said: "There are a few spots that are probably calcifications that we'd like to watch in 6 months."

Um, ok, I said, what does that mean? Should I worry?

"I wouldn't worry. You have had a few spots and now they are forming a circle, right near the lumpectomy site. It's fairly common. We will watch it to make sure it's not something else."

FORMING A GODDAMN MOTHERFUCKING CIRCLE?

is what I thought. Circles inside the body are BAD. I just looked at her, asked some more questions, she answered in the noncommittal way that says we think you're fine but we're not going to say that because we don't want to get sued if the shit hits the fan, and I went back to get dressed.

The radiation tech came with me. She grabbed my arm and told me that if Dr. W. thought something was wrong, if she thought it could go "the other way," I would be lying on the biopsy table right now. She gave me a long explanation for why this is a common occurrence after breast surgery. She kept talking about how good and thorough the doctor was.

"I know that," I said. "She's the one who put me on the biopsy table in the first place."

I felt...well, kind of relieved, but not as relieved as I would have liked to feel. I wanted to have another year, not six months. The surgeon saw me, thought I looked amazing, the oncologist said the same thing: "everything seems fine. you look great. have a good summer." Neither of them took much stock in my chest pains or breathlessness issues. They seem to think I'm OK, that I'm actually NED, that I've made it to the three year point. I feel happy, yet ambivalent, a sense of relief and a sense of trepidation, suspicious and grateful.

What a strange cancer trip this is.

After the last doctor's appointment, Gabe and I went for an early lunch, then he good-naturedly hung around while I went shopping for a bit, then we walked along the lake, and then we went to a movie. If the first half of the day hadn't been spent in the cancer ward and if we hadn't needed a sitter for our kids, this long day would have been like one of those dates we had back when we first met, when we had nothing but time for each other.

We drove to our favorite theater to see Iron Man 3. The irony was not lost on either of us. The last time we went to see Iron Man in a theater, I had been diagnosed with breast cancer just days earlier. I remember the scene where Tony Stark talks about the poison in his body that was keeping him alive, and I remember thinking how surreal my life had become, that I could relate to a fictional superhero better than I could relate to regular people in my life, like my friends, my neighbors, my kids, my...everyone.



This time, we were much more relaxed, obviously. We put the arm rest up in between us and I swung my legs over Gabe's and yeah we are still dorks like that. We enjoyed the film, even when it got ridiculous. Near the end, Tony was talking about being a changed man. He lamented how hard it was to live with shrapnel in his chest. The monologue continued, and I looked over at my husband, not for any reason, just because that's what couples do periodically when they're watching a film.

He had taken his glasses off, and he was silently crying.

I looked away, looked back at him, and asked him what was wrong. He said, "you know what."

How hard it is to live with all this shrapnel in my chest.

I looked at Gabe. He said, "You don't have it anymore." He cried a little more and then he stopped.

I sighed and rolled my eyes and patted his thigh because that's what I do when he cries, since I'm not good with crying. He smiled at me, as if he knew what I was thinking, but he didn't. I wasn't thinking about Iron Man, or cancer cells or the metal that is, in fact, still in my chest in the form of staples in my tumor sites. I was thinking about this:

The doctor who diagnosed my cancer, the one who gave me the worst news that I have ever received in my life up until this point, handing me a piece of paper and telling me I am probably fine. She shook my hand, looked right in my eyes and said:

"It was nice to meet you."

I was thinking about how she didn't recognize me, she didn't remember me. I was thinking that is because she is busy and sees lots of people and her relevance in my life is a thousand times greater than my relevance in hers. But as my husband dried his eyes and took my hand to lead me out of the dark movie theater, as he put my purse on his shoulder as if we had been married 50 years, I was thinking this:

Of course she didn't recognize me. Back then, I was somebody else.

Saturday, May 4, 2013

Day 1,046: The Waiting



The waiting is the hardest part.

That is what they say, but it is not, in fact, the truth. Any time spent waiting is time spent living, a luxury that so many no longer have. Any time spent waiting without knowing when and how you are going to die is time spent living presently, without the constant weight of compressed time pushing you further into the ground.

I have had three years.

On May 4, 2010, I would have told you that, three years from now, if I was still alive, I would know that I was free—free of cancer, free of fear, free of the albatross of mortality that hangs around the neck of a cancer survivor so obviously, even though no one is getting off of this boat alive.

I would have been wrong.

Three years is only an achievement if this is a contest. It is only a victory if this is a game. It only denotes bravery if being allotted less time denotes cowardice. It only increases the chances of a long, cancer-free life in the sense that three years have already passed, and three years ago, that seemed like an impossible dream.

Three is a magic number only if this life is magic, which it decidedly is not.

Three years was a placeholder, a hook on which to hang my hat once my hair grew in again. My husband clung to the very notion of three years with levels of faith and devotion that he otherwise reserved for his feelings of love for me and his children, in absence of his belief in anything “higher.” My mother has clung to it, my friends might celebrate it, other cancer survivors who don’t know me but read these words anyway have been rooting for this day to come for me, for them, for all of us.

And so the day has come, as days are wont to do.

It has come in spite of the pains in my chest, the occasional breathing problems, and all of the other things that could mark the premature end of my days in a way that does not apply to you. This day has come, and it has brought with it sickness and health, menopause and puberty, growing up and growing older, and all of the cycles of life.

Three years has come three days before the annual mammogram that could start the clock all over again.

Three years came without fanfare, or celebration, or even relief.

Three years passed without my children knowing that three years had passed since I found out I had cancer, because they were too busy being aware of three years passing since they were 4 and not quite a year old. They were not even the same human beings, really, three years ago, so why would the passing cancer time be relevant?

Three years passed without my marriage or the passion within it noticing the toll taken by time and disease. Three years passed while some of my friends walked away, others walked closer towards me and still others walked into my house for the first time.

It is entirely possible that three years have passed as cancer cells invisibly multiplied within my body. I do not know that that hasn’t happened, and neither do you, so saying otherwise isn’t helpful and believing it doesn’t matter. I’m ecstatic that as far as I KNOW, I don’t have cancer, even if I do, in fact, have cancer.

In the past three years, so many things have happened, and I have related many of those stories to you. Some stories are larger than others.

One day, in the last three years, I got carded at a restaurant. I laughed when handing my ID to the server, who did not even think of carding my husband, who is a grand total of two months older than me. The server raised his eyebrows in honest surprise and said, “Really? What’s your secret?”

And I shrugged and laughed in the way that I thought women are supposed to do in those situations, but I think I did it wrong, because I didn’t blush; I can’t remember the last time I blushed. He walked away, and I turned back to my husband who was rolling his eyes and I said this:

“There is a secret to the fountain of youth, isn’t there? It’s one third DNA, one third taking care of yourself, and one third knowing you’re going to die.”

I should have changed the formula to fourths, and added: “not having any imminent reason right now to think death is coming soon.”

Death is coming, but how hard it must be to know that it is coming prematurely. You might live with the notion that life is impermanent, but I live with that notion differently than you do. People with late stage, incurable cancer or other lasting and terminal illnesses live that reality differently than I do. It is not fair, but it is true, and we should stop pretending that happiness and love and beauty can erase the difficult truths of other people’s lives just because we wish it were so.

Yes, you could get hit by a car tomorrow, and so could I, but you know what? I’ve already done that, and I will tell you this: It is easier to live through an immediate trauma, like a car accident, when you don’t have time to contemplate the possibilities. It is easier to live by the rules of good living when an entire society isn’t judging you for every bit of sugar you ingest or drink you consume or moment of laziness you enjoy. It is easier to not have had cancer than to have had it, but at the end of the day I will be the first to admit that it is easier to not have it right now, today, while I’m writing this, than the alternative.

Three years passing has not given me peace, nor taught my body to sit still. Three years passing has, perhaps ironically, made me more manic, more restless, and more aware of how unbelievably quickly three years pass, whether or not you are suffering, whether or not you are happy, whether or not you are healthy or loved or lonely or lost or grateful or dancing or thumbing your nose at the very idea of three short years.

I’ve had three years, and I hope to have many more. I hope that my children have infinite years, though I know that what I hope for is not even remotely possible. I was told three years ago that making it this long was a milestone for someone with my form of cancer. I needed to believe that then, because I needed something to help me get through the days and the weeks and the months, and thinking about the years helped me to do that.

I have spent time over the last three years thinking about these years before they happened. I also have spent time thinking about my childhood, my adolescence, and my youth, which is a strange bit of nostalgia for someone who was only 34 when the whole mess of thinking started. And I realize that I have treasured them all equally, as I have treasured my children’s days: without sentimentality, without wanting to go back, without wishing things were different. I am glad that things were, and things are, and that hopefully things will be in the future.

“Are you ready?" Klaus asked finally.
"No," Sunny answered.
"Me neither," Violet said, "but if we wait until we're ready we'll be waiting for the rest of our lives, Let's go.”
― Lemony Snicket, The Ersatz Elevator


I thought that I could not possibly say anything on this third cancerversary that I did not say last year or the year before that. I could not think what to say until I decided not to say much about cancer at all. The words flowed easily when I decided to talk about time and memory, the subjects I have been contemplating all my life and expressing in this virtual forum since that unfortunate day when my life changed, just like that, three years ago today.

Those who say that living in the present is better than dwelling in the past are just not aware of how lucky they are to be able to separate the two. Today and tomorrow will eventually be “back then,” but only if you are lucky enough to live long enough to remember them that way.

And so it is that our hope for the future gives us something to look for in the surety of the abyss.

If you are new to this forum, you will wonder why I would include the following piece here. If you have been reading this for some time, you are likely to understand. This piece is not about cancer. It is about a love that ended, or shifted, and not neatly, because life is rarely neat. I wrote it 12 or 13 years ago. It is still true, even if I do wear glasses sometimes, at least to drive a car at night or when I want to look like someone else. But now I realize that the things we say and feel about love and life are not just true in that moment of sadness or ecstasy or grief or contentment.

Those things are always true, for three years, for thirteen, for thirty, and, most importantly, for now.

I hope to still be here to share them with you in three more years.

The Jealousy of Perfect Sight
by Katy Jacob

I've always been the only one who could see everything.
Legend has it that my uncle and I have eyes so dark
that nothing can be missed, that the absence of light lets in
all the things that are lost to the rest of the family.
So all my life they would ask me,
can you read that sign, is that where we're supposed to be?
And I'd say no, a mile is too far even for me.

I can see so well it hurts my eyes, doing all this looking all the time.

I want to go to the eye doctor like I did when I was eighteen
and I couldn't focus, couldn't tell what to watch for,
until I was sure I was going crazy.
I thought, glasses, that'll fix it.
How wrong I was; the doctor couldn’t help me.
I wanted to plead with him, but he simply sent me home,
told me to look away sometimes, not to strain so much.

I can still see as well as I can do anything.

I'm also good at finding things.
When glasses are lost to whoever needs them
so much they can't see them, I know exactly where they are.
No matter what we've been doing,
no matter if they were thrown off in a hurry
because everyone says it makes kissing easier,
which by the way I have never believed,
even then I don't forget.

I can't get away from these big perfect eyes.

Sometimes I wish when I'm looking right at you,
seeing you as you really are and not just your shape,
or a vague sense of color, or something to hold on to,
when it must be for you like making love in the dark
at any time of day, whenever you want,
I wish that your glasses were mine;
that I could pick out what to see,
have a choice, a piece of myself to take off,
something to look for in the morning.