Sunday, July 28, 2013

Day 1,131: Mastectomy Blog

A little over three years ago, I wrote a post called Lumpectomy Blog. Until my recurrence, when a whole new band of readers began following this blog, that piece was one of the most widely-read pieces I'd ever done. I did a decent job of explaining what it really FEELS like to have a lumpectomy--not the physical sensation of the operation, necessarily, but the whole process.

I don't think I have that in me anymore.

I don't have that much to say about the mastectomy I underwent on Wednesday. All of the feelings that I can remember so vividly from my first cancer surgery--the fear and sadness and disbelief, but really, more than anything, the fear--have just disappeared.

I feel--how can I say this?--bored in thinking about writing about my mastectomy.

Going through a mastectomy is anything but a boring process. It is a perfect shit storm of scheduling, nearly impossible decisions, preparation and recovery. It hurts like a bitch. You have these ridiculous drains to contend with, and if you're me, you are asked to pull this gargantuan wire out of your own chest a few days after the procedure, making you feel like some kind of Iron Woman for real. Moreover, no one seems too concerned about the things they used to care about after someone has a major operation under general anesthesia--no one cared if I could shit or cough or walk without feeling woozy. As long as I could get up and give myself a shower--which I did, about 18 hours post-op, hold down some food, which I did, eventually, after puking up the entire breakfast I greedily ordered the next morning, and learn to strip and empty the drains myself, easy no problem, I could go home.

I could go home and continue to be bored within this boring nothingness of continued cancer.

Maybe I don't feel BORED exactly. Maybe I am just tired of it. I am fucking tired of cancer.

I am sitting in limbo, ready to get my drains out because they have already gotten to that point--in 4 days, not 10 to 14. I am waiting to hear my pathology on Tuesday. Waiting to go to the oncologist on Wednesday and get handed my chemo sentence, something that I just can't imagine happening at the same time that I am resigned to it happening. I have these fantasies of myself writing a blog post about avoiding chemo, wherein I commit the breast cancer sin of admitting that to me, cancer without chemo is hardly cancer (and I'm sorry, and I know that sounds bitchy, and I know that women who go through breast cancer without chemo are real cancer survivors, because I am not an idiot). Because if all I have to do is this? All I have to do is feel pain, and pain is easy, because my experience with it is that it ends, unless you die from it, all I have to do is become permanently disfigured, all I have to do is spend months trying to regain the level of physical fitness I had before this pile of shit dropped on me?

That's nothing. That's barely worth writing about--that's BORING.

But that's probably not what is in store for me, and I know that. So, until I know exactly what I'm facing, I could and probably should sit here and tell you what it is like to have a mastectomy for a cancer recurrence, after having a lumpectomy. I could and should write about my guilt and regret over not having a mastectomy earlier, but that would just be paragraphs full of lies, especially given the number of women with triple negative breast cancer I know whom have had recurrences post-mastectomy in the skin, in the tiny bit of tissue between the implant and the chest, and in the chest wall. I could write about having this particularly aggressive, scary and misunderstood type of breast cancer, but I have done that before and I'm not sure now is the time to do it. Now is the time to write about what it is like to have a mastectomy, regardless of the situation that got you to that point. That is what I do--I tell stories; I tell people what it is like to do this. But my description of what it was like for me would not do the operation--the EXPERIENCE of mastectomy--justice.

Because I have felt such an abundance of nothing, and that is not how it is for most women, I'm sure.

I mean, look. I was apprehensive beforehand, I had trouble sleeping, I was getting fidgety when my surgery was delayed for 2 hours. I was glad that Gabe and my brother were there with me. I was unfazed by the plastic surgeon pulling my gown down and marking my breast, then signing it, so we all knew it was the right one; I saw my brother looking away. More than anything, I just wanted to get it over with, and that is the feeling that has stayed with me.

Let's get this shit done.

Right now, we are all fairly sure I don't have mets. So what I have is the second level of cancer, the level no one ever wants to discuss or admit exists.

Sometimes, cancer is a chronic disease, a chronic condition. Sometimes, it takes a long, long time for cancer to work its way out of your system, no matter what you do to fight it. This can happen even when cancer is not destined to kill you.

No one wants to hear this. You are supposed to fight cancer once and win. The alternative, I guess, is to "lose."

There's not a lot of language out there for those of us who just have to keep fighting, keep sacrificing bits of our healthy selves in some kind of absurd ritual to the cancer gods.

All of these milestones that I have covered so ambivalently over the last three years (the worst for me has always been Thanksgiving--am I really supposed to feel more thankful as a cancer survivor? I have always been thankful. It has always been my favorite holiday. Most times, I just skipped the Thanksgiving post and wrote something else entirely), including the supposedly-triumphant "three year cancer survivor" mark, seem even more shadowy now. The things that I lost and regained from chemo might be lost again, this time forever. I have lost my breast forever and replaced it with this strange thing that doesn't look anything like me except that it does, because now, it is me.

I should write about that--about waking up after surgery, going to the bathroom, and stripping off my gown to look at my new body. I should write about things like phantom pain, body dismorphia, sadness and anger. But I can't, because I didn't feel any of those things when I looked at myself. I saw myself, with a strange, high lump on my chest that is even with my real breast on top but maybe half the size on the bottom, with no nipple, a huge scar under the steri strips, drains hanging out of it, and blue dye that was injected into it that will probably be there for six months (I'm still peeing out the dye--placed in a last ditch effort to find my sentinel lymph node, which couldn't be found, because it turns out I only had two lymph nodes left total in the axillary area, so they were both removed--meaning that even if they are positive for cancer, no extra surgery needs to be done, because there is nothing left to take, and also meaning that my activity level can remain normal in that arm in the future, as I've been operating in a lymph-less situation for years anyway). I looked at myself, and thought,

Huh. That's not so bad.

I'm surprised I didn't say a mental WHATEVER.

This has surprised me. It surprises me because I am not HAPPY with my reconstructed breast, though I am probably happier to have it there than to have nothing, because it really will look normal in clothes, and I can see that even now, through the bruising and the swelling and all of it.

You might think that I am in denial, or that I will one day feel these things I haven't yet felt.

I doubt it.

I've done this before--and worse, probably. When I was nine years old, I woke up and was unable to walk one day, unsure if I would ever walk again. I didn't feel angry or sad, though I was terrified, and not of not walking, but of what had happened to me and how close I was to death, that concept that suddenly became real and inevitable, right in the middle of the fall of my fourth grade year.

I remember what I thought back then.

Oh. I guess I am not a walking person anymore.

I also remember the euphoria that I felt when I made the discovery that I would be one again, that life changes, and that things can come back to you. But that elation does not, nor should it, take away from the original feeling of acceptance that many people dismiss as depression or denial.

Some people go through life never knowing what the body really IS. I have never been one of those people. I have been aware of my body, of the seemingly meaningless functions and quirks, for as long as I can remember. I know that most of you can be healthy while part of you stops working completely. I get that. That is not denial. It's just an uncomfortable truth, or maybe all truths are uncomfortable at their core. Maybe it is just hard for a society so taken with the idea of winning, so obsessed with youth and fitness, to confront the suffering and death that is waiting for all of us with nothing more than a shrug of the shoulders and the refrain here we go again.

People have been telling me how good I look since the operation. I appreciate hearing this, so don't feel the need to stop saying it, but this fact helps me prove a point. People always told me this during chemo as well. I would be standing there, bald, weighing 111 pounds, having hot flashes and morbid insomnia, wearing no makeup and some boyish clothes, and people would say damn, you look so GOOD. And I would always say thank you, even when sometimes I wanted to say, well, I don't have cancer of the FACE. But even then, I knew what people meant. They mean the same thing today.

I look healthy. I look fit, and strong, and awake and alert and young and with it and all of that. And that, I suppose, is the surprise. But you know what?

I am healthy. I am fit. I am young. I am lopsided but it's not so bad.

The only thing wrong with me is this damn cancer.

I'm ready to be done with it.

Monday, July 22, 2013

Day 1,125: The Calm Before the Storm

Sometimes, when a person has cancer, her writing is filled with deeper thoughts. And sometimes, her writing is about cancer, and what it feels like to have it, especially if its effects are somewhat unexpected. This post falls into the latter category.

I never thought I would feel this way about a cancer recurrence, an event I have been dreading for more than three years and trying to will away as if wishing for something can actually make it true. I never thought I would feel so much...nothing.

Obviously I don't actually feel nothing, but my emotions do not seem adequate for what has happened. I was diagnosed with cancer for a second time only 10 days ago. After going through a grueling series of scans and tests and spending seemingly all of my time at the hospital or in the cab on my way to the hospital, I found out some things that were truly important. First, I learned that I would have surgery--a mastectomy--on July 24, which is less than two days from now. I decided to do a one-step reconstruction (done at the time of surgery with a saline implant, with no additional appointments; it is easy to remove if I don't like it, or so I've been told.). And then, I learned this:

I don't have metastatic breast cancer.

Or, at least it doesn't seem that I do, not right now. Who knows what's going on inside the cells of this body? Regardless, I have been busy with cancer, living a cancer life, for the last 10 days. Of course, life continued in all of its other manifestations, and I still had small kids at home, I still had to work, and I also had to figure out how to manage the extremely complex new plan for my transition to my new job. Everything has been a blur. I actually have no idea how I managed to get all of those scans, tests, and appointments scheduled so quickly; I think my entire medical team feels terrible that this has happened, and I have been put on the fast track. So six days after my diagnosis, I received the news that my breast MRI was clear, meaning that I would be able to have a single mastectomy and conserve the right breast, and my bone and CT scans were also clear, meaning that I do not have mets.

"Clear" is an ambiguous term in cancerland. For example, the woman who gave me the news about the CT scan had a distinct lack of compassion in her bedside manner. She told me that my scan was fine, though there were some nodules on my lungs. And I thought

I have lung mets.

She told me that these nodules are present in almost everyone in the midwest, that the radiologist even marked that they were most likely benign, and they would "not worry, just scan again probably in 3 months." And I thought

I have to go through that shit again in 3 months?

I tried not to think about it, but seeing as that wasn't possible, I just changed the subject and asked about chemo. She answered me flippantly: "Oh, I'm sure you'll have to do chemo."

What? But I was told there was some chance that wouldn't be the case! If it hasn't spread, and it's really small, and if we find out it hasn't spread to the lymph nodes...even though I'm triple negative...and then my mind was spinning, full of the knowledge that it wasn't as if they were going to offer me chemo because they knew it would work, but rather because they knew that nothing else would. I started thinking about the fact that I had already taken my lifetime allotment of adriamicin, that cytoxan is a drug they would mostly likely want to give me, and it is literally a derivative of mustard gas with a 100% chance of killing my ovaries at least temporarily and taking from me the sexuality and vitality that I currently have, I started thinking about taxotere with its 6% chance of permanent baldness, the permanent neuropathy and chemo brain that so many contend with, and suddenly the "Flowers for Algernon" effect that I have discussed here before was fully present. Oh, to know what will happen because it has already happened, to know what is coming, to have to decide if it is worth it. I will go on record to say that I am not sure that it is. I know how that sounds and I know that is not what I am supposed to say. But it is what I was thinking then, and what I sometimes think now when I allow myself, but at the time of that phone call my mind was reeling...

And she went on about a study. One study. Showing there would be some benefit to me. Because I have a 1.3 cm tumor.

EXCUSE ME? The ultrasound showed that it was 0.5 cm! And I was told that the possible difference between chemo and no chemo was whether or not it was under 1 cm!

Oh, she said nonchalantly. Yeah, sometimes the MRI magnifies the tumor. You won't know until surgery, and you'll meet with your doctor a week after that and he will let you know.

Thankfully, a different nurse had already called me with the results of my exams, and she was ecstatic for me. The humanity she brought to that phone call counterbalanced what was to come from the second phone call.

Though I was let down by the uncertainty of whether or not my scans were clear in a normal person sense or just a cancer person sense, I was so thrilled to get the news of not having mets (not now, not yet, not ever?) that I had the giddiness of a child. I went to the gym and flew on my bike in the spinning studio. I made waffles for dinner. I spent the late part of the evening talking and drinking and making love with my husband. I thought about this:

How strange it is to be glad to just have breast cancer twice.

I started to think of how I felt when I was diagnosed the first time, and how much I would have given to have been the young nursing mother without cancer, or at least without knowledge of her cancer, that I had been before May 4, 2010. I thought about how much I would give to be that woman again, the one who had finished cancer treatment once and never had to do it again, the one who kept her perky, beautiful breast even after all that had happened. I even let my mind wander to the people I know who have had huge tumors, lymph node involvement, scattershot pre-cancerous cells, who nonetheless never had a recurrence.

And then I mentally slapped myself.

I know, though I can't really KNOW, how much so many women would love to be like me. The one who, for the time being, only had breast cancer, in the breast, twice. The one for whom the waiting has been the hardest part--for waiting is only the hardest part if at the end of the waiting, you receive good news. Otherwise, the bad news and the reality that it brings is the hardest part. I am not right now facing a terminal diagnosis, an incurable disease. I am facing the reality of having to do chemo again, probably, but not for the rest of my life. And so it goes that I am angry and resigned and relieved all at the same time, which might explain why those emotions manifest as me behaving pretty much exactly like I always do, but with more pictures of me in a bikini. It might explain something that most people don't realize when they're faced with someone who has a thing like cancer.

We don't know what to say either.

Now, we know what we're SUPPOSED to say. We're supposed to say something to make you feel better, to make you feel that it will be all right. We're supposed to be all, CANCER! BRING IT ON! But some of us have done this before, and somewhere along the way we lost the ability to pretend. So, when you ask how are you? someone like me might say "I've had better weeks," or "plowing through the bullshit, thanks." If you say I'm sorry, I might say, "I know" or "me too." If you say, is there anything I can do? I might say "Not yet, but when it comes time for that, just show up at the door and ask. Because calling people to tell them we need something is a thing that I might just be too busy and overwhelmed to remember to do." You ask what the plan is, and I say I honestly have no idea. You ask how I'm feeling, and I say "like myself. like a really healthy, fit person. except for the cancer." If you are a radiologist about to perform a core needle biopsy on me, and you ask me to verify my date of birth and then you look at me and say " you are a very young woman," you probably expect me to say something other than "I know. I was even younger the first time." Because not only is that hard to hear, it is impossible to miss the fact that if I said the first time I know before I KNOW that it is happening again. If you happen to be another breast cancer survivor and you ask me if there's anything I need, I will be as honest as honesty allows and say:

Drugs and a time machine.

Sometimes I think I would like to go back to the time when my body just worked, when I wasn't fighting it or fighting someone else who wanted something from it. In order to do that, though, I would have to go back to about five years old, before epilepsy and being unable to walk and cancer and the way I learned to be mean as a teenager. So maybe that's not it. Maybe I'd just like to be done, and yet I know that isn't how it is for me, so it is hard for me to feel emotional about a thing that just IS.

I will miss my breast. Right now, a month shy of my 38th birthday, after two pregnancies and 18 months of breastfeeding and two breast surgeries and radiation, my breasts are still perky and beautiful and my nipples are beautiful too and I don't care how that sounds. I am angry that I can still get away with wearing a bikini, and yet I might never be able to wear one again. I am sad that my husband looks at my naked body with desire mixed with sadness, as he knows that we only have one more day with this body as it is right now. I am done caring about people who assume breasts are irrelevant body parts, because no body parts are irrelevant. I will not get into the disturbing experience I had with various surgeons trying to convince me to do reconstruction, nor the advice of others who haven't been in this situation. There is one thing that I'm going to say about my mastectomy, because it is the opposite of what most people are expecting me to say.

I'm really, really glad I didn't do it three years ago.

The chance of this recurrence happening was in the single digits. It was less likely for this to happen to me than for a healthy woman to be diagnosed with breast cancer. Besides the fact that I had many fewer issues with scar tissue, range of motion, and muscle pain, besides the fact that I had no drains to contend with, no major restrictions on my activities after the first 10 days with a lumpectomy than I will undoubtedly have with a mastectomy, there is the fact that the surgery itself is so much more arduous. It takes many hours, you have to stay overnight in the hospital, and it takes weeks and for some people months to recover.

I recovered from my lumpectomy in about 5 days the first time, and 3 days the second time.

That was so, so important back then...if not for other reasons, for this reason:

I had a baby.

My son turned one just days before my first surgery. It was hard enough to see the look on his face when he wondered why I stopped nursing him all of a sudden, but how could I have explained to him that I couldn't hug him, couldn't hold him or pick him up, for weeks and maybe months? What would that have done to my relationship with him? Even when my body was being ravaged by chemo, I could feed him a bottle, hold him and sing to him.

I know there are women who have no choice but to figure that out with their babies. But I wasn't one of them. So I'm going on the record to say that I regret nothing. This is especially true because I don't believe I am really having a cancer recurrence at all.

I believe this cancer has always been there.

When I was diagnosed the first time, I was told that my three tumors, the smallest of which was 0.5 cm, had been there for 3 to 5 years. I was told that even with fast-growing, triple negative breast cancer, that is how long it would take for a solid tumor to become palpable at that size. So. It takes three years for a solid tumor to grow to be 0.5 cm.

Here I am, three years later.

The fact of whether or not this is a recurrence or just unfinished business is not relevant in a sense. But in another sense it is, because of the possibility that I have never, not for even one day, been cancer free. That idea could be crushing, except for this:

Except for this.

It is this that makes that reality easier to bear, this forum that brings me this calm acceptance, because I have always stated here that cancer is not a learning experience. If it was, everyone would do it. Cancer is a disease that can ravage your body and lie in waiting and come back when you least expect it. It can happen even if you do everything that was asked of you, from treatment to overall fitness. If all it took was the willingness to be a fighter and kick ass and take names, cancer would be on the losing end of history by now.

I'm sorry that is how it is. I'm sorry that I am not one of the ones who fought the good fight and won. I'm sorry that I have to start over, that my cancer clock will start ticking again from midnight, as I await some vague milestones that once seemed so important but now just seem like another way to mark time as it passes, quickly and inevitably. I am no longer a three year cancer survivor with no evidence of disease. I have probably never been that person.

What I have learned over the last ten days is that in a sense, that reality is harder on other people than it is on me, or my husband, or my kids. No illusion has been shattered here, because we worked through the illusion long ago. I wish I could say that KatyDidCancer, but apparently Katy is still Doing it. When I say that why me? is the wrong question, and why not me? is the right one, I hear all the people who say, because it was you already. Because it shouldn't be you. I hear it and I hear the sadness and anger and disbelief in others' voices, while I am left with a resignation borne of the knowledge that this never should have happened at all, but it did, and well, here we go again. Just as having cancer cured me of my fear of heights, being honest about the unfairness of the physical, corporeal world has spared me the grief of disillusionment.

It would be a lie for me to say that I never thought I would write these next few lines. I thought I might have to write them, but I hoped not; that, I suppose, has kept me going.

In less than a day and a half, I will have my breast removed, along with potentially all of the lymph nodes in my left arm. A week after that, I will receive a pathology report and recommendation on a second round of chemotherapy.

Wish me luck.

Tuesday, July 16, 2013

Day 1,119: Say a Little Prayer for Me

I am not a religious person. Most people know that about me. I've always been this way. Sometimes, especially in these kinds of times, I wish for a fleeting instant that I was a different type of person--a person who could pray, a person who could cry, a person who could just react to things differently than I do. But I can't get away from myself, as none of us can. I know there are some people who prefer for others to respond to events in their lives in ways that they can understand, but I am not one of those people. I would rather people respond to me in the way that I know they would respond if such a thing had happened to them, because when people do that, they are offering you a little piece of themselves.

I have been very...touched?...that seems like much too mild a word--by the response I have received to my posts about my cancer recurrence. The thing that has touched me the most is the way that the KINDS of support and love I have received are such perfect reflections of the people who are offering them. And you know what? I love to see reflections of people.

I have always deeply appreciated the prayers others have offered for me. It doesn't matter that I am not the praying type. What matters is that most people are, and so many of them--many of whom I don't even know--have set aside time to pray for me. To talk to God for me, to get down on their knees and ask for salvation for me. When I hear people say that they are praying for me, I can literally picture them doing it, and the image that conjures in my mind brings a kind of peace and strength to me, as it is borne out of this human bond we all spend our lives trying to make sense of out of the chaos.

Other reactions, and responses, might seem off, but really they're not; really they just allow a window into the person who is setting aside time and energy and resolve for you, or in this case, for me. People have sent me hope for peace. People have held me in the light of God. People have offered me their best magic, their most prolific swear words, their food and babysitting and their company, their best attempts at hiding their true feelings.

I am also intrigued by the responses I have received from other breast cancer survivors. These responses actually vary less than those of the general population. They are filled with cussing, almost 100% of the time, regardless of the disposition of the woman in question. Women who have done this before hear that I am doing it again and say WHAT. THE. FUCK. They say things like "that fucking blows." "What complete bullshit." "This fucking cancer sucks ass." One woman who was sharing her experience of having a recurrence and going through the scans and tests I am doing now said the following to me:

"It's a shit storm. I'm sorry, but there's no other way to say it."

True story.

As I sit here waiting--waiting in a way I have done once and hoped I would never do again--to find out a little bit more of my fate, the humanity that I have witnessed in the wake of this bad news is not just a comfort, but a reminder. It is a reminder of what I am waiting to find out--I am waiting to find out if I will have more time on this earth to bask in all the glory of humanity or not. I am waiting to find out if I have a terminal, incurable disease, or if I do not, at least not now, not yet. This kind of waiting is different than other kinds of waiting.

Metastatic breast cancer is incurable. No matter how much we hope and pray and research, that is the reality right now, today. And a recurrence such as mine brings a higher chance of mets. So I have been spending my days scheduling and engaging in MRIs, CT scans, and bone scans. I am most worried about the CT scan, as I have had some breathing issues off and on, and that is scheduled for tomorrow.

Prayers, magic, mojo, crossed fingers, swear words, vibes, and whatever else you've got are much appreciated.

I did the breast MRI and bone scan today. I already know that the bone scan is clear. CLEAR.

There is relief, and then there is finding out you don't have bone mets. I hope you never have to understand the difference.I think every day of the people who do this kind of waiting all the time, and it is not to find out if things are ok, but rather to find out that things have gotten worse. I know I could be one of them--any day now. But today I am not, and that day is important.

These scans are arduous endeavors. They are claustrophobic, uncomfortable, seemingly interminable. The rooms are so sterile, the machines so loud, the air so cold and dry, and then there is this.

You do this alone.

Isn't that true with everything? People say you are not alone, and they mean it. And they prove it as they offer themselves in service. But when it comes down to the final analysis, the real deal, we each have to live our lives and experience our experiences ourselves. No one can take our place, not even those who gladly WOULD take our place.

In those moments, with my body inside a machine that is taking pictures of my insides in order to assess the likelihood of my near-term survival, I recognize the way that we are simultaneously alone and connected.

Someone has to perform these tests. Someone has to prepare you.

Some of these people are very cold and businesslike--I have experienced that before, and it doesn't bother me. Today, though, I had a very different experience. The intake nurse for the bone scan chatted with me for 10 minutes about my childhood car accident. She was so warm and bubbly and aghast, all at the same time. The woman who placed my IV before the MRI joked with me and told me I was skinny and gorgeous and she literally pinched my cheek. In the middle of the 90 minute bone scan, shifts changed, and a new tech arrived. He arrived just in time to take the final pictures of my chest and head. When he told me to move my head to the left, I tried--really I tried--to will away the single tear that fell, the only tear I have shed all day, but I failed. He saw it, and he did me the favor of pretending not to see it; he turned around and began to whistle a tune. I was covered in blankets and lead aprons and my body was inside a machine. When I came out, he was in the back of the room and told me I could get up, so I arose from the machine slowly and stood there in my street clothes. He looked at me, as if for the first time, and then he looked down, as if to say, I'm sorry. You don't look like someone who should be in here. He faltered. Um, OK. You're all done. I will show you to the bathroom.

The first tech who did the bone scan was the same one who placed the butterfly in my arm to prepare the solution to pump into my veins. He told me I had great veins, and I laughed and said that I was always told the opposite, usually when the person failed to place the IV. Then he said, "You should always come to me then. It's not your fault. It's their fault. They just aren't good at their jobs." And we smiled at each other and I began to stare off into space, trying not to think about what I was doing and why I was doing it. This man, who was probably around my age, short and stout, had a quiet, almost a lilting voice. He looked at me and did not look away. And then he said:

"What are you doing? Thinking? You know, you can't change it by thinking about it. Think about something else, something happy."

He was trying to comfort me in the same way that he must try and comfort dozens of people a day, every day. He said it knowing his words were hollow. And yet, something happened.

All of a sudden I began to think about people like him, who do this for a living, and the things they say and do to try to make their piece of the awful puzzle a little less cruel. I started thinking, then, about all the things--all the things.

The way people are, the way they do things, all the people who are

speaking softly, joking, whistling, swearing, buying you a beer, praying, crying, trying their best not to cry, looking away, doing their best to look you in the eye, calling on their best magic, calling out the unfairness of it all, reminiscing with you, reminding you

that this is what you are trying to live for, more of this, all this humanity that you see.

This soft-spoken man said a few words to me to distract me away from myself. And it worked.

Because for hours from that point, I was thinking of something else, even as my body was visible to me on a computer screen as nothing but a collection of bones.

I thought of him, and of all of you, and in my mind, I began writing this.

Sunday, July 14, 2013

Day 1,117: How to Tell Your Kids You Have Cancer

My daughter is 7, and my son is 4. I would not normally include that information here because I assume that everyone who reads this knows me and my family. Normally, somewhere between 50 and 150 people read my posts, and most of those people are friends and acquaintances. There are some posts that are popular hits through google searches, but that surprises me even today. I began writing this the day after my diagnosis solely so that I would not have to answer all the questions that people would ask me in person or on the phone, and neither would my husband. And then at some point, this turned into something else. And that is how within 36 hours of publishing the post on my recurrence, more than 1,500 people had read it.

That's a new one for me. Perhaps I will find a way to thank all of these people all over the country and the world for their support, but right now I am not sure how to do that.

So, I am going to write about telling my children that I have cancer again.

A little more than three years ago, when I found out I had breast cancer, I was a 34 year old nursing mother of an 11 month old boy and a 4 year old girl. Besides the fact that people's faces would practically collapse with sadness when they learned these facts--even other, older breast cancer survivors had this reaction--one of the hardest parts of being in that demographic was that I had few people to ask for practical advice. Most women with breast cancer have older children, because they are older themselves. It is extremely rare to find out you have breast cancer when you are nursing a baby five times a day.

And so I had these questions, but there was no one to answer them. Should I tell my daughter? If so, how? I needed to wean my son, but how soon? What could I do to make the transition easier for him? How does a person balance going to work, raising a toddler and preschooler, and going through chemo-induced menopause, all at the same time? Should I freeze my eggs?

Doctors attempted to give advice, albeit badly, I will admit. Most of them advised against telling my children. They also advised me to wean immediately, though my surgery wouldn't happen for another month. I decided that this was all nonsense, and I found someone through Imerman's Angels who had also been nursing a baby when she was diagnosed. I began to ask other breast cancer survivors to dig deep into their networks and find me some people who had small children at diagnosis. Ultimately, I had completely weaned within a week, though none of us could foresee the long-term implications of that sad time. Also, everyone I spoke to who had small children when learning of their cancer--and believe me, there are not many of these people--said that I should tell my 4 year old.

That soon became obvious, because she already knew. Well, of course she didn't know I had CANCER, because she didn't know what that was, but she knew something was terribly wrong. And so, I told her, at a time when I hadn't planned on telling her, and she seemed to feel better once she knew.

But back then, she didn't know what was coming.

I planned on Friday to tell them today. So many people have asked me, how can you tell your children you have cancer? So I am going to tell you how.

My breast still hurts from the biopsy but not nearly as much, so I decided this morning that I could spin at the gym. I got up and made a single cup of coffee. I was getting ready to leave when Lenny came downstairs. I got her breakfast ready and sat down with my coffee. My mom spent the night at our house last night, but it was still just the two of us at the table.

How do you tell a 7 year old you have cancer? Well, you say:

K: Hey Len I have something to tell you. Look at me. I found out that my cancer came back.
L: How did it come back?
K: I don't know, but it did. So I have to have surgery again, but this time it's going to be a bigger surgery because they need to take the whole breast. They might need to take them both; I don't know yet. And I will probably need to do chemo again, but I don't know that yet either. So you will see Meemaw here more often and probably other people, like before, and I might be bald again and sick and not be able to eat with you guys.
L: And you won't be able to cook, right?
K: Well, I was always able to cook, but being around food made me feel really sick. People brought us food, remember?
L: Yeah I remember. We lived at the old house the last time you had cancer.
K: Yeah.
Lenny points at a picture that is behind her in a frame; it is a picture of Gabe and I dressed up for a date. I'm bald.
K: I know you didn't like that last time when it happened. But then you got used to it. And it grew back.
L: Well, last time we didn't know what was going to happen, so we were worried.
K: Are you worried now?
L: No. Does everyone know? (she starts naming family members). So, Augie is the only one in the family who doesn't know? (she is smiling, reveling in another contest won).
K: For now. And I am going to be the one to tell him. Maybe you can help him understand, because he won't remember. He was too little. Do you have any questions for me?
L: No, not now.

And then I went to the gym. And I discovered it is much harder to tell adults, because they do things like cry and put their hands over their mouths and look at you with a combination of fear and sadness and disbelief. They begin the businesslike refrain of "well, what's the next step?" and look even further pained when you say that you don't know. None of this is wrong, and none of this is their fault, but it is still harder than having one of the people you have given your heart to just looking you square in the face and making you understand that this is a thing that has happened before and it's happening again, and there are other things like that, none of which make you cry.

I was eating fruit when I decided to tell my son.

He was playing a game on the iPhone when I returned from my class. I told him to put it down and look at me. He looked at me out of the corner of his eye and tried to keep playing the game but I must have given him that mom look because then he stopped. I said, "Augie, I need to tell you something. I found out that my cancer came back." And he said this:

"What's cancer?

And it hit me that telling this kid that I have cancer is like telling a child that she is adopted. OK, so what? What is the relevance of that? Woman, you're telling me a thing that has always been true, that I have always known and I have accepted it, even though I didn't know what it meant. Does this cancer thing really MEAN anything?

So I just told him that I had bad cells in my breast that needed to be removed with surgery. I told him that I have to find out if there are cells other places, and that I will probably have to do cancer treatment again, and I will probably lose my hair again.

His hand instinctively went up to his famous red curly hair and a tear came to his eye. "NO! I don't want you to lose your hair!"

At 4, that seems to be the hardest part, the idea of your mom having no hair. But that is only the hardest part until other hard things happen. My daughter cared when I lost my hair, but she cared a hell of a lot more when I spent 72 hours in the hospital with a temporary heart condition from chemo. And my son? Well, he has never known any different. It crushes me to know that that will no longer be the case. I was hoping one of my kids could be spared the memory of all this shit.

Clearly, we don't always get what we want in this life.

Last night I began to get angry about losing my breast or breasts. I was feeling angry not because I think breasts are vital to a happy life (though honestly, is there any other body part that people regularly lose that we would question grieving over? Just because society has decided that breasts exist as cosmetic props to ensure men's sexual satisfaction does not mean that breasts ACTUALLY serve that function, so if women grieve their loss, they should not be judged for their feelings) but rather for this reason: I don't want to have to go through something like this when I am otherwise so healthy. Maybe if I had saggy, pancake breasts, it would be different; I have perky, beautiful breasts right now. Maybe if I was old, had lived a full enough life to watch my hair turn white and my skin get wrinkled, this loss would be easier to bear. Maybe not, but the point is this. I was angry because I am too young to go through this at all, much less for the second time.

But there's nothing to do about that except know that life isn't fair, and go to bed, and try and sleep. And then, when your daughter bursts into your room at 4 am and says she had a bad dream, and normally you would feel annoyed at being woken, you ask her what it was about, and again, you envy other people with different children who have dreams about monsters and things that aren't real. She says that she had a dream that she was swimming in the lake up north and she jumped off the platform and held her breath too long and she drowned. She said this to you while lying in the bed next to your husband. You put your arm over his bare chest and rubbed her back and you wanted to cry over the fact that she had dreams about dying, but instead you said:

"Well, that's why you wear a lifejacket when you're out that deep. Plus, one of us is always with you. You wouldn't drown." And your husband chimed in, "We would save you, Lenny." And then he carried her back to bed.

Both of them went back to sleep, but you could not. Your mind was racing with thoughts about who would reassure your children and teach them things when you were gone, and those thoughts were accompanied by the simultaneously comforting and crushing realization that other people would fill that void, however imperfectly. So you cry, in your fashion, and your husband tries to make you feel better by telling you he loves you. And then your mind does you the favor of saving you, by offering you this recent memory, which shouldn't help, but of course it does.

Earlier this week, before I found out I had cancer, we were all sitting at the breakfast table getting ready for work and summer school. My son began to lament the fact that he will never be the oldest one, that he will never be the one who was born first. And I told him that was true, but that was just how it was, just like there would never be a time when I wasn't his mom, no matter how old he was. And he said:

"You won't be my mom when you die." And then Lenny chimed in:

"Yes she will. She will always be our mom, even when she's dead."

I must have given her a strange look, because then she shrugged her shoulders and said,

"What? You taught me that."

Friday, July 12, 2013

Day 1,115: KatyDidCancer. Again.

This is what I do.

This. I write this. But that's not what I mean.

This is what I do. I survive on the unlucky end of the health spectrum, in spite of being a hell of a lot healthier and fitter than many people, and then, I write about it. I did it with epilepsy. I did it with a terrible car accident. I did it with cancer.

And now, I'm doing it with cancer--again.

Up until now, I have done this without looking like the kind of person who should do this. I have always been too young, too rosy-cheeked, too pretty, too muscular, too symmetrical, too SOMETHING to be one of THOSE people, and yet I have indeed been one of THOSE people. I have lived as one of those people whose personage, perhaps, exists to remind others that everything is fleeting and that nothing should be taken for granted. Everything that has happened to me has hardly left its mark.

That is about to change.

My breast cancer has recurred. I don't know much, except that the smooth, round, painful lump (the three things that cancer is not supposed to be) that I felt right by my lumpectomy scar for the first time a little over a month ago is indeed cancerous; it is a tumor approximately 0.5 cm in size, or so they think. The full pathology isn't in, so I don't know if it is still triple negative, but I'm sure it is.

I am having trouble writing this, not because I am too beside myself, too hysterical, but because I am not, and it is hard for me to explain. I feel strangely resigned, strangely at peace. I am not saying that I am OK with this. I am just saying that this is what is, and this is what I need to do, and in some sense I feel that this is what I was always meant to do, because not everyone lives a healthy life and not everyone lives a long life, and there's no reason why I would or would not be one of those people.

I found out about my recurrence today, but I knew it yesterday. My ultrasound, ordered by my breast surgeon on Tuesday after she did an initial ultrasound herself and decided it wasn't good enough, turned into a mammogram which turned into five core needle biopsies right on the spot. This was an exact--AN EXACT--replication of what happened three years ago. The radiologist was different, and you know what?

I was different.

I wasn't in denial. When the radiologist nervously chatted with me about my job as she prepared to do the biopsy, I knew. I could hear it in her voice, I could see it in her mannerisms. She showed me the images. I straight up asked her if it looked like cancer and she lowered her eyes ever so slightly and said "it looks like what you had before, but it could be fat necrosis. Because of your history, I can't tell you to wait it out. What do you want to do? I could do the biopsy today if we can get an order from your surgeon, or tomorrow, or Monday." I said, do it now. I need to know.

But I already knew.

So, I had Gabe call my mom and tell her to pick up the kids. I cried in the changing area of the mammography suite in the way that Katy Jacob cries: suddenly and ferociously and for about 30 seconds until it just stops, and I wipe my eyes, and suck in my breath, and say well. I guess I'm done crying. And then we went out, and I got drunk. While I was in the hospital, I received a voicemail from my gynecologist; I had called him, as he asked, to tell him I was getting an ultrasound. His message said that if I got a call from a number I didn't recognize that night, I should pick it up. Around 9:30, I did. He sounded so devastated. He knew, not because he KNEW, but because I told him the other doctor had said it looked like cancer. He called me sweetie and said he didn't know what else to say. And last night, I could hardly look at my children. I have not seen them since it was confirmed. They should be home in an hour or so and that will be the hardest part.

But so much is hard, that it becomes relative to talk about things that way.

This time, I have not refused to pick up the phone. I have not felt much like talking, but this time, I am different. I knew I could do it, that there was no longer any time nor place for denial or even anger or second guessing or anything else but resolve. I called my mom myself. I picked up the phone when a dear friend called from Seattle after seeing my facebook status "Remember when you told me I looked good bald? Tell me again." I gave my brother the news in person; he happens to be in Chicago for a few days for unrelated reasons.

If you think you have done difficult things, imagine telling your mother and your older brother that you have cancer and seeing the look on their faces and hearing the grief in their voices. Imagine realizing that they feel that they are living in opposite-land, because they are supposed to go through things before you do, including, and maybe even especially, the bad things. Imagine, then, telling your husband, who is beside himself with fear. This time, I took the call from the radiologist myself, because I knew I had cancer, and I didn't want Gabe to hear that on the phone. Last time, I needed him to take down information for me, but I felt this time that that was a small gift I could give to him, the gift of not hearing me hear this news. When she called me and said "we have your results back. I am so sorry. I know this isn't what you want to hear. It's a recurrence," I cried, Katy-style, again. I raved a bit. And then, I did what needed to be done and I asked the appropriate questions. And eventually Gabe opened the door and I nodded at him and saw that crestfallen look on his face, a look that I hope none of you ever has to witness on the face of the person who has pledged his life to you.

Imagine doing that twice.

Imagine having to tell your children. I plan to do that myself, on Sunday, after they have had the chance to go to the all day block party where we used to live. I can imagine telling Lenny. I cannot even began to imagine how to tell Augie. He was just a baby. And now he still is, but not really, and he knows things, and of all of us, I think this might be the hardest on him. You know what a parent's love is when the hardest part of admitting you have an illness that might kill you is the sadness that they will feel over potentially losing you. And somehow, I am comforted by the thought that they have almost always been children with a mother with cancer, so they know how to do this, and they have a strength that other children don't have, and I gave that to them, whether I wanted to or not.

I told Gabe that he has to get it together, that I have to know this time, really KNOW, that he and the kids could get along without me. I told him that I wished he had never had a vastectomy because now he can't build a family with someone else. I told him that I wanted to see the kids grow up, that I wanted to grow up, grow old even, and he just cried and cried and said that I would, and I said that maybe this is what I do. I was not saying these things to be dramatic. I was saying these things because they need to be said at some point and I am strong enough to say them right now, today. I am not concerned with protecting his feelings. He said this time he might have to get a barber to shave my head and I said no. You will do it again like you did it before and I know that now. And he is Gabe, and he has cried, and sent cryptic and terrified emails to people, but this time, he too is different.

We have done this before, and now we know we can do it again.

Of course, the thought of other surgery options, why did I do a lumpectomy, maybe I should have never taken a drink, maybe it's sugar or lack of vitamin D, all of that began to crush me. And then I spoke to the doctors. And the surgeon reminded me that I had clean margins after my last surgery. She reminded me that if my cancer was bound to come back, it was better to come back in the breast than in the chest wall, which could happen post-mastectomy. She said, this shows your cancer was aggressive. Because you did chemo and radiation, and it still came back, so you did not make the wrong choice. You treated the cancer you had then. And you will do that again.

When the surgeon called, she was very businesslike, as usual. She cares, I know she does. But how else could you deal with this every day? She started off by saying, now have you ever met with a plastic surgeon...and I immediately cut her off, something I rarely do to doctors. And I said this:

I met with Dr. X three years ago. I am not doing reconstruction.

The surprise in her voice was evident. Um, ok, so you don't want to do it. OK.

And I realized that I knew instinctively what was behind her initial question. I knew without being told that I have to get a mastectomy now, no other option. And if I am going to opt for tissue expander surgery, they coordinate that with the plastic surgeon at the time of mastectomy because it is easier to do both at once.

And I'm not doing it. Not if I need a single mastectomy, not if I need a double. Later in the call I told her that the plastic surgeon had told me I wasn't a good candidate for the reconstruction options that take tissue from your body and make it into breasts, because I am too thin. She agreed. So, I said, that leaves tissue expanders and implants. And I know how long that takes, I know how many appointments and surgeries it is, I know so many people who have had complications, and I don't have time for that, I don't want to do it.

And then she began to speak with me freely, as if I were not someone from whom information needed to be kept, but rather someone who could take it, because I understood already what was happening. I do not yet know what I am facing, because I have to do all of the tests to see if I have mets, now that I had a recurrence. That is the one place I am not allowing my mind to go, because I am not willing to let it go there. I know I need a single mastectomy, but I am not sure about a double. I am strangely at peace with the idea of my soon to be disfigured body. Right now my breasts look so wonderful, so healthy. But I have never cared greatly about that, and again, perhaps I am one of those people destined to look "other" at the same time that I look "normal" so that hey, maybe you should think about that.

What I'm dreading is chemo. I don't even want to get into that. There is a very very slim chance I could avoid chemo but I'm sure to be triple negative again so it's doubtful.

I should say, as an aside, that all of this has happened exactly three days after I announced my resignation for my current place of employment where I have been for 7 years and accepted another position, based in another state (though I will physically remain here). The timing is just so surreal, that it borders on the absurd.

Perhaps the last three years of writing this blog has set the stage to prepare me for this, because I have put everything out there, laid my feelings bare, announced time and again that I don't believe that cancer cares about the content of anyone's character. Perhaps I do not feel the need to justify my decisions nor defend myself nor feel guilty because of this, this forum, that has enabled me to be real, and to see for myself the impact that realness has had on other people.

I curse the fact that I am in this place, but it would be false to say that I cannot believe it. Of course I can believe it. I have feared it for more than three years. Three years ago, fear encompassed me. I was afraid of being BRCA+, I was afraid of finding out my stage, I was afraid of surgery and chemo, I was afraid of being bald, I was afraid of mets, I was afraid of dying, I was afraid of the unknown. That fear was so overwhelming, so I sat down at a different desk in a different house and began writing this, and admitted to that fear, and by writing it, by weaving all these strange stories together and seeing the larger picture, something has happened.

I am not afraid anymore.