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."

Day 932: Chemo: The Gift That Keeps on Giving

Just so you know, one of the more aggravating things about being a breast cancer survivor who has done the typical trifecta of treatment--surgery, chemo, radiation-- and is lucky enough to still be alive a few years later, is how everyone assumes you are "done" and completely back to normal.

Now, most people realize that you are forever changed, even if that is hard for them to say out loud. But the assumption is that you have made it, you beat it, and, well--you're done.

Let's ignore the fact that remission doesn't technically exist for breast cancer. Let's ignore the legitimate fear of metastasis that you live with oh so casually. The thing is, breast cancer treatment stays with you for years, regardless of how healthy you are. Sometimes, vestiges of it are with you forever.

So it is with chemo. Chemo was so hard on me, and so much bullshit happened, and yet, I have recently realized that my body actually handled it amazingly well. I see what other people go through, and that skinny bald girl with no sweat glands who refused most side effect meds seems like some kind of superhuman now that there's some distance between us.

There were all the random signs that my body was extremely angry with me for poisoning it like that, and I did have the heart scare (which turned out to be an allergic reaction to taxol, no matter what any doctor says) and my WBC count did plummet that one time, making me unable to do the sixth chemo session on time. But I bounced back even from that all of five days later. I never had neuropathy, nor chemo brain. My weight dropped but not precipitously. I remained active. I never got too tired to function, even with the morbid insomnia when I didn't sleep at all for five days. I never needed a blood transfusion. I got over menopause. I didn't even burn badly from radiation. And once I was given some physical therapy, I was once again able to do all kinds of exercises that a lot of able-bodied people who haven't had cancer nor chemo can't do.

I was, I suppose, lucky. Or maybe just really healthy, and young, so I could withstand the poison. Who knows? I guess it doesn't matter why.

But chemo changes you, not just through the Kafka-esque experience of it all or the baldness or the way people treat you like you are someone else. It actually CHANGES your body. For example, I really did used to have all of my toenails. Why three of them decided to wait to fall out until two years AFTER chemo, when many people lose many or all of them DURING treatment, I will never know. But there it is. A reminder.

And I have been going back and forth about whether or not to write about the absolute most depressing aspect of cancer treatment that I have dealt with--the seemingly inevitable return of early menopause. I really thought I had beat that. I have voiced my concern over the Flowers for Algernon effect of knowing what I know now about menoapuse, and never wanting to go back, knowing that I inevitably will someday if I live long enough.

I just thought I had more time. I am only 37!

My cycles are short--one sign of perimenopause; my last cycle was only 19 days long and that left me so depressed as I thought of the implications that I just sat down and cried. Even with these new cycles, for a long time, my raging libido was back and I was my old self, sexually speaking. Now...it's different. Nothing is gone nor terrible but I have my days, or weeks, when sex is difficult for me the way it is for many women. I feel completely alien to myself in those times And I am raging against what this means for me, and I am filled with anger over having to kill my healthy ovaries, and I live in fear of what it will be like to have hot flashes every ten minutes all day long again but this time there will be no treatments (not allowed for breast cancer patients) and no end in sight. Call me dramatic. I don't care. It upsets me enough that I can't say any more about it.

I can, however, say something about that gum surgery I had yesterday.

At some point I wrote about how one day, in the middle of AC chemo, I took what I thought was a piece of food off of my front bottom tooth and my entire gum came off. I had an emergency dentist's visit, and was told that it might regenerate. Around Thanksgiving this year, so more than two years later, I realized there had been no regeneration and that sometimes my tooth hurt. I didn't want to lose the tooth, so I went to a few different peridontists, both of whom told me I needed a tissue graft to shore up the tooth and protect it. I dreaded the very thought of the surgery.

And I was PISSED. AC chemo can do a number on your mouth. I remember having to use the mouthwash for dry mouth and using the special toothpaste because I had no saliva left. Do you know how dangerous that is? It doesn't sound bad, but let me tell you, IT IS. Some people lose their teeth or just watch them crumble along with their toenails. People get horrible mouth sores. So, I had this stupid gum thing, and it was probably not that bad in the scheme of things, but it was, and is, a REMINDER. And that seemed bad enough.

I did my research on these grafts. One of the doctors suggested I get the surgery using cadaver tissue. OK, yuk, right? But that seemed like a better alternative than dissecting the roof of my mouth and leaving a gaping wound there to get infected. However, it's very expensive to do it the cadaver way, and that office never bothered to keep in touch with me, so I made the appointment with the low-rent local office that wanted to go old-school.

I considered ways to get out of it, right up until the bitter end. It seems absurd, considering how many things I've been through that are worse. I mean, I've delivered babies for Chrissakes. I've had CANCER. Who cares about mouth surgery?

But it's like something out of a horror movie, right? There's just that memory of Marathon Man in my mind. Yikes.

But once I was there, I don't know--it wasn't that bad. He only used local antisthetic (a hell of a lot of it, as we redheads require more anesthesia--seriously, true story), and the whole thing took maybe 20 minutes. He put a washcloth over my eyes "to protect them," though I'm sure that was code for so you can't see what the hell we're doing to your face. Of course, I could see out of the corner of my eye, so I watched the whole thing.

As an aside, I've always been like that. Medical procedures fascinate me. As a child, I would watch them draw blood during routine checkups for epilepsy. I watched the seven core needle biopsies done with the 15 inch long, half inch wide needle. I watched the chemo course into my veins. I stared at the raw wound on my arm when I was burned at 19 and it was being professionally cleaned.

So, I watched as this dude stuck a scalpel in my mouth and cut open part of my flesh, placing it on another part and threading a few needles into my mouth for stitches. I watched him as he asked his assistant to "dab," meaning wipe off my face--up to my nose, close to my eyes in fact--because of all the blood that had spurted everywhere. Then I watched him put some silly-putty looking stuff over the wounds, though some places actually give you a retainer or something. Again--old school.

Afterwards, I waited for Gabe to pick me up (I had walked over to the office) and sent him over to pick up my antibibiotics (I informed the doctor of the one that I know I am not allergic to--they should just let me write my own prescription at this point). I went to get some ibuprofen from our medicine cabinet only to find that we had none. I had refused the narcotic painkillers--can't take codeine, don't like tramadol--and let me tell you that shit HURT. I kept calling and texting Gabe but he wasn't picking up because apparently he'd left his phone at home. I wanted to kill him when he got home, but he had picked me up an US Weekly, along with The Bourne Legacy and Ted to watch from bed, so I couldn't be that mad. Plus, he found the ibuprofen. I was in a lot of pain; I felt like I had been kicked in the mouth, but you know what?

It really wasn't so bad. I could even eat today on one side of my mouth. I did some conference calls for work. I went to the gym today for a spin fusion class and was almost happy that the pain in my mouth distracted me from the pain I always feel in my chest, or the pain I felt today in my hips because it's a very strange, rainy January day.

Does it hurt? Sure. But I've had so much worse pain, this barely registers on the scale. I didn't take any painkillers at all until late in the afternoon. So, I probably should have done this sooner, honestly, if I hadn't been so damn annoyed at the very thought of having to have surgery because of chemo years after chemo ended.

So this is just to say that the poison that you ingested can stay with you, for a long, long time. That fact is part of what it means to be a breast cancer survivor. And sometimes I write this blog just so I can tell it like it really is, no matter how little people would like to hear it.

It stays with you in ways large and small. When the mail comes, I wonder who the genius is who still sends me Victoria's Secret catalogs, and I decide not to renew my Glamour magazine subscription after almost 20 years because there's so much stuff in there about HAIR and other things that just seem pointless, though it does teach me that this permanent bedhead look I have going on could maybe pass for stylish. And I have to have surgery, and I will probably go into menopause many years before I should, and none of this would have happened if those little tumors hadn't decided to rock my world a few years ago. It is what it is, I suppose.

Here's to healing, for now, and for as long as I get to keep the feeling.

Day 844: The Puking Post

There comes a time in every woman's life when she realizes that it's not all giltz and glamour. For example, when she gets really frustrated driving through awful rush hour traffic with her children in the car on the way to pick her husband up from work so they can all get a jumpstart on the last vacation of the season. It's a gamble, really, because her three year old son had had a mysterious rash the day before that led to him being sent home from school, and her husband had taken him to the doctor, only to be told it was probably allergies, due to the melon they had thought he could eat after all but apparently…he could not. His entire body was covered in hives, but then, they went away, so on the family drove.

After that fight she got in with her husband due to the annoyance with traffic, the drive was smooth, albeit long. She decided to stop at an actual restaurant rather than the same Wisconsin fast food chain that the family always patronized solely due to their corporate policy of placing changing stations in the men's rooms. Oh the freedom of ordering from a menu while sitting down! And yet the three year old wouldn't eat--anything. He was out of control. She herded everyone back into the van, and soon he started crying, claiming "it hurts where I eat." So she stopped at a gas station, looked in his mouth, and his throat was red and inflamed, so she bought cough drops, which he wouldn't touch, and called the doctor, who thought he might have strep. So the next step was to try to find a Walgreens in Green Bay, so the poor kid could have antibiotics if he needed them, as the closest pharmacy to the lake house was 35 minutes away and closed on weekends, and they had gone too far to turn around and go home. Somehow the family found the place, and the prescription was miraculously there, but it took a long time to get it filled. As she waited at the counter, she turned around when she heard a familiar voice and there was her family. Why are they out of the car?! she asked her husband incredulously. Oh, they wanted to run around and stretch their legs, he said. Great, she thought, rolling her eyes.

And then, a few minutes later, her three year old started to vomit all over the store. Once in aisle 2, once on the way out the door, and again in the parking lot. Suddenly she was in full mom mode, telling the staff what happened and apologizing, glaring at her husband for bringing a sick kid into the store, taking her son over to the grass at the end of the parking lot in case he needed to puke again, ordering her husband to drive the van over, finding the pajamas she had packed and changing her son out of all of his dirty clothes, chucking the vomit-laden shoes (worn for the second time ever) into the trunk, strapping him back into the car after giving him some tylenol, and then, after all of that, just laughing and laughing.

She had to laugh, right? Because all of a sudden, that kid was fine. Singing, talking incessantly, making it hard to concentrate on the dark, dark road ahead. He never needed the antibiotics. That whole bizarre illness is just a mystery. A story now, one that this woman realizes can fit into the annals of puke stories that every woman at her stage in life should have. It can be added to so many others:

that time growing up when her entire family had the stomach flu, and a neighbor kindly brought over some dinner when they all started recovering, and that dinner was some greasy duck, and everyone started hurling again just looking at it.

that dorm party freshman year of college, when everyone had the bright idea to mix cheap vodka with fresca, and she bummed some cigarettes, and then quietly went into the coed bathroom, locked herself in a stall, threw everything up in a very confined way in the toilet, made sure no one would be able to tell, and then brushed her teeth, so she wouldn't be one of those entitled college kids who did disgusting things and then expected the janitorial staff to clean up the mess.

that valentine's day when she was 23, when her long-term boyfriend had planned to take her to the top of the Hancock building for the first time, to have a drink and go dancing. All their lives they had lived in this city, and neither of them had ever seen that view. And as fate would have it, they still wouldn't see it, because she started vomiting violently and frequently from some illness that came out of nowhere. She got sick 14 times in a span of four or five hours. Her boyfriend held her hair for her while she puked, made her jello, cleaned everything up. When her stomach began hurting so badly she couldn't stand, she called the ER, positive she had food poisoning, and they told her um…if you threw up that many times in that many hours, yes, your stomach will hurt. And she practically crawled back into bed, and her boyfriend tucked her in, and if in some universe that is romance, well, there it is.

The night before her college roommate's wedding in Los Angeles, when she was 27, when she went out on the town with one of the bridesmaids and another of her roommate's friends, to a bunch of different places in Little Tokyo. After having some sushi and saki, they ended up at a karaoke bar, where it became obvious that they weren't from around here. So the cute bartender kept sending over free drinks--huge, complicated, strong drinks. Fifteen free drinks between the three of them, one of whom had to drive back to the hotel. As she got increasingly drunk, this young woman who really didn't drink much at all got quieter and quieter. She began to realize why she wasn't much of a drinker, given that most people become more animated, not less, that most people don't just retreat into themselves at the height of their drunkenness. And she had the worst hangover the next morning, giving her another reason to be that girl who didn't drink that much. She got so sick that she became hungry for having nothing in her stomach, and she turned to that generous basket of food her friend's mother had left in the hotel room, and she ate oranges, the result of which was that she didn't eat oranges again for a very, very long time, because they didn't taste very good coming up.

The day when, at age 31, she experienced a replay of the original story here, and her entire family of three was laid out with the flu. As her daughter, nine or ten months old, recovered more quickly, she just began crawling over her sick parents who couldn't move from the floor. Mom or dad would get up only to go puke in the bathroom, and the baby would quietly go into the corner and look at a book, a portent of things to come.

That time, soon after she started her current job years ago, when she felt so sick at work that she knew she wouldn't make it home even if her boss gave her permission to leave. So she got sick in the employee bathroom, told her boss about it, and he said, ugh, just go, get out of here, and she rushed to her commuter train, hoping and hoping she would make it home before getting sick again. The motion of the train made things worse but she held on, bolted out the door at her stop, and puked all over the sidewalk. People walked around her in disgust. It was winter, and she had vomit in her hair and on her down coat and the wind was whipping it back into her face as she heaved. And she felt pretty damn alone in the world, until a woman walked up to her, quietly asked her if she was all right, and gingerly handed her some kleenex before walking away. And today, six years later, she can still recall that woman's face.

That other time when the family of three (four, actually, as she was pregnant with her son at the time), was driving up to this lake house, and it was the daughter who started puking in public, in one of those fast food restaurants previously mentioned, and the staff had to be alerted, and she continued to vomit in the car, but it was so dark in the north woods roads that she had to sit in the back and watch her while her husband drove, and they made it up to the house, but things didn't get better. Neither she nor her husband got sick, but her daughter was so miserable that they began to understand what "listless" meant, as she just sat there, mute, not moving. So they cut the vacation short, hoping to not ever go through something like that again.

And then those times, so many of them, when the thought of living one more second with that nausea was the worst thought in the world. Those times, at age 34 or 35, when vomiting was a relief. The time she got motion sickness just from making love to her husband, the other time when she ate her first normal meal in weeks and then felt so off-kilter she stuck her fingers down her throat and forced herself to throw up while her husband patted her bald head and told her it would be all right. That endless feeling of nausea, when just the smell of food warming in the kitchen sent her upstairs away from the family.

This story just became one more in the list, the one of the kid with the hives and sore throat puking in a random drugstore parking lot and then engaging her in a conversation about the color of his vomit, suddenly not sick anymore but more interested in the philosophical question of what does it mean if your throw up is blue? Well, it wasn't honey, it was red, and full of grapes. But what IF it was blue? but this time something was different. It was different because she knew it was a story right away, she knew to laugh at it, she knew not to worry or be disgusted or disappointed. She knew it was possible that they would all spend their entire vacation sick as dogs, but it wouldn't matter, because if that was going to happen, it might as well happen in a beautiful place during a time when no one had to go to work or go to school or even walk out the door once they got to the house in that remote, remote place. It didn't matter, because they would be together, having learned some things from the other stories.

And then this--the memory of this. As she waited for the prescription, before her child had arrived to defoul the pharmacy, a woman came up to the window, looking a little lost and embarrassed. She waited for a minute, for the other younger woman there to go away, apparently. She didn't leave, so this woman, in her late forties probably, a few cans of pop in her cart, asked the pharmacist: "Do you have anything for hot flashes?" And somehow, the pharmacist, a woman herself, couldn't help. They started joking, and she said, well dump yourself in a bucket of ice? haha, well obviously this woman has never had hot flashes or she would know that shit isn't funny, and then she suggested black cohosh, and the younger woman found herself nodding her head, knowing that was suggested, though it never had worked for her. After a minute of listening to this conversation, the younger woman turned to the other woman and told her they made something called i-Cool, and though it might not work for her, it was worth a try. The older woman looked confused, like, why does she know that? And the pharmacist couldn't help her locate it.

And then the kids came in, and the next vomit story commenced, but not before this happened. After her son got sick in the store the second time, she knew she should just rush him out the door. But she saw the other woman still looking lost and miserable, so she handed her son to her husband and told him to take him outside, she would be just a minute. And she went to the area of the store where they have the stuff for hot flashes, because she knew just where it would be. She grabbed the box, went over to the other woman, and put it in her hand. This woman looked at her with such shock that she felt she should explain: "Look I went through menopause from chemo. Maybe this will help you." And the woman just looked at her, not knowing what to say, so she said "Oh, wow, thanks. Thank you!"

And then, that story became that other story. The one she told her husband once they were back on the road, kids clean and happy again, and he laughed and high fived her, and told her she had done her part. That one.

Day 813: Don't Think Twice, it's All Right

So I think I'm going to be OK.

How is that for an understated, casual opening line?

I mean, I don't have a heart condition. And, I don't think I have lung mets.

Can I get an AMEN?

Those issues I was having literally scared the shit out of me. It was not in my mind, and now I think I have an inkling of an understanding of what was really happening--but I'll get to that later. When my blood pressure shot up to 143/80, I was convinced my heart was having trouble. And no, it's not because I'm a hypochondriac. It's because I had radiation over my heart AFTER taking this heart-terrorizing medication affectionately known as either the Red Devil or the Red Death, because while it looks like cherry Koolaid in that syringe, when they push adriamicin into your body, you literally feel the coldness of something approaching death course through your veins, and the nurse looks at you to make sure you're still breathing, and then they do that shit to you again and again. So, you know, I wasn't nuts for worrying.

But when I saw that blood pressure reading, I said, screw this. If they want to put me on those damn beta blockers again I'm not doing it. I hated those. So I made a bunch of changes to my already healthy lifestyle. I love coffee, but I don't drink very much. At home I make it half-decaf and I pour it out as soon as it gets lukewarm. A few days a week I was going to starbucks for iced coffee, no sugar or milk, and since that's mostly ice, it didn't seem like a big deal. I was having one drink every night to help me relax. While we were up north, I was making "up north dinner," or crockpot dinners that could last us three nights and not necessitate going to the grocery store, which was really far away. Things like vegetarian chili made with canned beans. Chicken-rice stew/soup made with those packaged rice things. Homemade pizza. I don't eat a lot, but I do eat like a real person. I'm no "salad's enough for me" girl.

This crap was terrifying me so I just stopped. Cut out caffeine, stopped drinking, started looking closely at sodium content and getting annoyed at how much sodium there is in everything. Even if you give up bread, it's bad. How do low carb folks do it? Dairy products are the WORST with sodium. For a while I was overdoing it and basically eating fruit for dinner, spinach salad for lunch at work. I continued my same workout routine. I was HUNGRY.

And I felt better. I scheduled an acupuncture appointment for the first time in a year and a half, and that made me feel even better. My last memories of acupuncture are positive, but I was never truly comfortable when I was doing it. The first time, I was just suffering terribly from chemo. Even when I was done with treatment, I was in menopause, having hot flashes while lying on the table with needles sticking up out of my translucent newly-grown hair. My scar tissue pain made it difficult to lie comfortably. I always stayed for the minimum 25 minutes and got out of there. She expected me to do the same this time. When she came to get me, I sent her away. I am lying here with nothing to do and nothing to think about and I'M NOT LEAVING! She laughed at me, gave me as long as I wanted. I am naturally restless, so I made it about 45 minutes--a record.

I went in for the heart tests on Monday. It was 100 degrees and due to the scheduling, I needed to take the whole day off of work for the appointments, so I drove down to the hospital. The ecchocardiogram was painless, and relatively interesting. I had one done when I was admitted to the hospital for heart problems due to Taxol but that whole weekend was so difficult I don't remember much of what the tests were like--even though I will never forget the kindness of that one doctor. An eccho is basically an ultrasound of your heart. The technician showed me everything--this is your pulmonary artery, that sound you are hearing is the blood pumping, those colors mark different arteries. It looked and sounded just like those early ultrasounds you see of your fetus in the womb. I asked if she could give me results, and she said: "I can only tell you if something life threatening shows up, that would make me concerned you were about to have heart failure. Barring that, the physician needs to read it."

She sent me on my way. I went to get the Holter monitor. That was fast--leads and wires taped all over my torso after she literally used pumice on my skin to rub it raw and make sure they would stick. I had this bulging monitor on, tape up to my chin, and I was wearing short shorts and a tanktop. Oh well, that's one of the benefits of living in a place like Chicago. You walk around the Mag Mile like that, going shopping, and the androgynous employees at Zara just look at you with utter boredom in their eyes, and people texting on their phones almost run you down because they are paying so little attention to anything outside of themselves, and no one gives a shit, because there are much stranger things happening.

And then, I waited.

Tuesday evening I got an email message from my general physician. Your Eccho is normal.

Late in the afternoon yesterday, prompted by my email asking her for results, I got another message: Your Holter results were normal, even during the one indicated time when you felt your heart racing.

I had been given a diary, wherein I was supposed to write my symptoms if I experienced them. Shortly after eating an Mburger for lunch around 1 pm, as I was STARVING, my heart started racing. I recorded it. I drove home, laid down, read a book about typhus destroying Napoleon's grand army in 1812 because that's the kind of thing that puts my issues into the grander perspective, and it was still racing.

Salt from the burger. Dehydration. My heart is fine--but there is something odd going on, and I think I now know what it is. I was thinking about this on Tuesday, when I finally got to take the tape and leads off around noon. I locked the door to my office, and thought I could just casually remove them. Wrong. It was like the smooth-chested female version of the 40 year old virgin up in here. Taking that shit off HURT. I still have red marks from it. I told Gabe he'd better keep his heart healthy so he never needs to have one of those monitors put on his hairy chest.

Jesus.

Water retention. In the eccho room, they took my blood pressure. Twice. It was 105/60. I was more nervous on Monday by a large margin than I was when my BP read high, so don't tell me that high reading was stress-related. I was also newly addicted to drinking water. For the 10 days or so that I've been on this experiment, my weight has not fluctuated much. I weighed 116.5 this morning. At night, I usually weigh about 118. When I was having the heart and breathing issues, I would sometimes weigh as much as 121 and I would complain about how fat I felt, how bloated I was. We make light of these issues as a society, even our husbands roll their eyes at us. We fail to recognize that what presents as vanity might actually be a real, honest to God PROBLEM. And like so many things, we trivialize it, sweep it under the rug, focus on the wrong thing--the "fat" days, when there's water pressing on your heart and lungs, the tits, when there's cancer trying to kill you. Well, no more. Some of us breast cancer ladies are getting testy enough to make our OWN shirts. Save second base? Really?

Water retention. In an extreme form. Water retention so bad, it put pressure on my heart and made it hard to breathe. Water retention that was worse at certain points in my cycle, but never absent. Yes, I realize that I'm self-diagnosing. But until I keel over, I'm going to make the unheard of assumption that I understand my body, perhaps better than anyone else. And my body has changed. The thing is, when your body changes drastically AFTER having some minor issues like CANCER, it can be hard to correctly place the problem and not sit around thinking about what your kids will look like when they're grown up and you're dead. Just saying.

Yesterday, I got myself an iced coffee for the first time in almost 2 weeks because it was so damn hot even at 5:30 in the morning while I was taking my walk. I drank two thirds of it but it took me a few hours. I got up from my desk to go to the bathroom, and I had one of these surreal post-cancer moments. I sat there--me, of the iron bladder, the woman who used to be able, even AFTER having kids, to go 7 hours without using the bathroom--for what must have been three full minutes, peeing. I mean seriously. Folks who came in after me were leaving and I was still taking a piss. My body was telling me, look lady, you're retaining too much of this shit. There's one more vice you just can't have.

Goddamn chemo-induced menopause leading me into a second puberty bullshit.

I got my first period at age 11. I went on the pill at age 18 and went off at age 29. I had my first child at 30 and my second at 33. I never, at any stage, had PMS symptoms. Heavy bleeding, vomiting, yeah I had that. But bloating? Depression? NEVER. And now I have days of the month where I get so down I literally feel almost worthless. I think, I am going to lose my job because I'm no good at it. My kids hate me. I don't have any friends. WHOA! KatydidNOT ever feel that way before these hormones blew up. Never.

Until now.

If I was 20, I wouldn't think about it. At my age, it's hard to believe my hormones could take me for this kind of ride. But there it is. I've been feeling like a rockstar at spinning, still a little out of breath, but better. And it's been 9 million degrees in Chicago and the air quality is horrible so that's not a huge shock. But here's the thing.

If you have lung mets, your symptoms don't get better. They might start out mild or barely noticeable and stay that way, but they don't get BETTER.

So screw that chest x-ray man. Just give me 47 bottles of water and I'm good.

Not just good but GREAT. I feel skinnier, more like myself. I won't throw out the order, but come September, I just don't think I'm doing the chest xray. Now, some of you will think I should get the xray anyway. Other survivors have said, now if it was ME and I had a chest xray order I couldn't get there fast enough! But you know what? I've had more radiation than any human being should ever have in her life and I don't need any more just in case radiation, any more my God I'm going out of my mind until I get those results, tests. I mean, I feel pretty damn good.

Last night it was 103 degrees and extremely humid at 6 pm. So of course, while the kids were at gymnastics, I went spinning. And I felt awesome. I drank two bottles of water in 45 minutes. I had to pee the second I got off the bike. BUT. The last song, during the stretch, was Purple Rain. And there I was AGAIN, tearing up in the gym, this time with happiness, passing it off as sweat as I realized that my heart is ok, my lungs are probably ok, there's something going on in my chest that might necessitate an xray, since it hurts so much, is so tender that if Gabe tries to touch that breast tears sometimes come to my eyes and if I push on the left side of my sternum I wince, but THAT IS NOT CANCER. Ruined pec or cracked bones from radiation, maybe.

But it's not cancer. Cancer doesn't present like that.

So there I was, flying on the bike in the sweaty gym, wearing a bright blue bandana on my head that I bought at the wig shop when I had my head shaved two years ago. Suddenly I had this image of myself when I was 25, wearing this mod dress, showing up at night at class in graudate school after I got off of a full day's work. Another student told me I reminded him of Mary Tyler Moore. I thanked him, though that hadn't been my goal.

Maybe it should have been. I lived in Minnesota for years. And you know what?

I think I'm gonna make it after all.

Day 690: Going Through Puberty...In Your Thirties

So, I’ve been thinking about writing about this forever, but it just seems too absurd to even put out there. And yet, that’s why I do this, right? I write this blog to bring a little bit of the absurdity of cancer into the consciousness of some portion of the general public.

Today I’m going to tell you what it’s like to go through puberty. When you’re in your thirties.

I had a fairly mellow real puberty experience a quarter century or so ago. I was a major tomboy from the age of 8 to about 12, but I was pretty comfortable with myself at that time. I resented my mom for making me buy a training bra when I was 10 (I mean, she stopped wearing them when she was 17, so what the hell?), and I found it more than a little annoying when I got my first period a few months shy of my twelfth birthday. I read all those Judy Blume books and didn’t relate to any of them, except maybe Tiger Eyes, because the girl in the book had some legitimate problems. Even Forever seemed cheesy, and I knew I didn’t want to ever have sex with boys who named their penises and expected me to use said names in conversation.

I wore some strange clothes in junior high, in part because it was the late 80s, and in part because I was figuring out how to actually dress like a girl again. I liked boys who would never like me back, and I was vague and indifferent to the ones who did like me. I would give anything to get a little bit of my dating haughtiness back from the golden ages of 12-14. I would say things to boys like “I don’t want to talk to you on the phone right now.” “I’m sorry, I don’t like you that way.” A boy would say please, I would say no. When did I learn to hide my feelings and lie?

But I digress. The point is, I went through the horror of 8th grade like everyone else (I think that’s the nadir of American children’s lives), and yet my awkwardness was relatively muted. I was pretty comfortable with my body and saw no reason to either hide it or show it off. I dated a lot, and almost all the boys I dated fell into the category of “kids who were so nice to me their friends made fun of them.” I liked fooling around and eventually I liked having sex and I never felt any regret about the things I chose to do or not do. I never had acne. Shit, I never even had bangs. I look at pictures of myself from that time and I look shockingly normal, given the fashion trends in the early 90s.

I did have some issues—my periods were so heavy that I was anemic in 7th grade and was almost put on birth control pills to help, until they realized that would interfere with my epilepsy medication. I got sick every month, and my cycles were long. But I never had any PMS (just violent vomiting for a day once my period actually started), my moods were fairly constant, and transitioning from being a girl to a woman was neither difficult nor surprising.

Then, I went on the pill when I was 18, something I would give anything to do over, given how sure I am that 11 years on the pill eventually led to my contracting triple negative breast cancer, but again I digress. My cycles suddenly became regular, short, and painless. I never got sick. I didn’t gain weight—well, not right away. I think the pill made me gain 15 pounds or so, but it took several years.

Then, fast forward. I went off the pill at age 29 in order to conceive a baby, and it worked. A few months later, Lenny was growing in me. I have never gone back on the pill, but of course I spent much of 2005-2010 either pregnant or nursing, so I had no idea what a “normal” cycle would be for me. When I began having normal, regular periods when Augie was less than 3 months old, even though I was exclusively nursing him, it seemed strange, but I figured what the hell. Let’s see what happens when I stop nursing.

I never really got to find out. I was nursing, then I found out I had breast cancer, and within four months I was in chemo-induced menopause. IT hit me like a truck. I literally had hot flashes every ten minutes all day long. ALL DAY AND ALL NIGHT, I would feel that fire tear through my body. I lost my natural lubrication and sex, while possible and eventually pleasurable, was depressing to me. Sex had always been so easy and so fun for me, I was more like a guy than a girl in the way I perceived it. I thought about it all the time—until menopause, when I never thought about it at all. How can hormones change your actual thought process? I never would have believed in the close mind-body connection of sexuality if I hadn’t seen the disastrous effects of menopause on my body and my desire. Menopause depressed me so completely. And then, it left me—so completely. I was desperate with hot flashes and sadly missing my sexual mojo when BAM. I was back in business.

And I started going through puberty.

You might think I'm exaggerating, but think about it. After Augie was born, I lost weight like crazy, and I've been hanging out in this size 0/size 2 reality ever since. Because of this, I shop in the juniors department at my local department store, where the salesladies have taken to setting aside size 26 Silver jeans for me. I think they like talking to people who don't have to come into the store with their mothers. Look, she has her own credit card. Go help her! God knows I need it.

Plus, I have new hair, and people treat me differently. I am like a tween in my bathroom, awkwardly trying to figure out how to use a straightening iron. After being bald and generally not worrying about what people thought of my looks, I am surprised when I get attention from men. And it's an adolescent surprise, full of flattery and pleasure but trepidation and suspicion as well. It makes me feel 14 again. I am in better shape than I have been in years--I might be in the best shape of my life in some ways, with my relative musculature and strength given this petite little frame. And yet I feel unsure of myself. I worry that I am too fat, or too skinny, or too something, which I never have really worried about, at least not for more than a fleeting minute. I look at and feel my breasts a lot, not to try to detect cancer, but out of some kind of absurd appreciation for what I've got left.

Are you there, God? It's me, Katy. I think I've lost my damn mind.

Anyway, for the last year, I have had periods every 24-28 days. These cycles are shorter and more regular than any I have had in my 25 years of menses. They are completely different, as well—the pattern of bleeding is very consistent but nothing like what I have ever had before in my life. Add on to that the fact that for the first time—EVER—I have every PMS symptom you can name, and it’s like 9th grade up in here sometimes.

I gain 3 pounds in the week before my period every month and my clothes don’t fit right. Then I pee nonstop for 24 hours and it’s all good. I get bitchy, or I yell at Gabe for no reason, or I start to cry on the train, and it’s like a little hormonal alien has invaded my body. I get headaches the day before my period starts, and I have a night of almost complete insomnia (with less than an hour of sleep) like clockwork once a month. I have bad cramps on that first day. My libido, which was always fairly constant, disappears for several days about a week before each cycle, and then comes roaring back and for most of the month I’m like some kid who’s discovering how awesome sex is.

Oh wait, I am actually that kid, because I had six months on the other side, and now I’m trying to make up for it.

But again, I digress.

I am too old for this shit. Pregnancy hormones, fine, I can handle that. It’s expected and you can talk to other moms about it, because everyone goes through that to some extent. But who do I talk to about this? How do I get used to new cycles, new hormones, new patterns that disrupt my life WHEN I AM 36 YEARS OLD AND I SHOULD HAVE BEEN DONE WITH THIS 20 YEARS AGO?!

I mean damn. My oncologist always asks me if I’m still having cycles, and he always seems surprised when I tell him how freakishly NORMAL everything is. “Well I guess we reset you with that chemo!” Ha ha, mother…

You know what I’m saying.

Every month it’s new to me. Every symptom comes as a surprise, and I feel ignorant, and young, but not in a good way. It’s just another sign that I’m not used to my body—the body that I have always felt fairly at home in, no matter what it was doing to thwart me.

Stupid cancer.

I’m starting to get it, starting to adjust to this new normal, but it’s tough. Cancer brings you to these weird places, because you can’t appreciate things in the same way that other people do. I could be happy with the regularity of my cycles, with my raging hormones, but it just makes me worry that somehow that will trigger cancer cells to blow up on me again. I worry that my cycles are short and that I have more periods every year than I should have. I think about menopause, about how awful it is, and that Flowers for Algernon feeling comes back to me and I want to rage against the possibility that I will deal with that again in 5, 10, 15 years, that I will lose all of this.

Shouldn’t I just be glad if I get to those 5, 10, 15 years, you ask?

You don’t ask that if you’ve had cancer. Everyone who is a survivor needs to be able to think like you do, that those 10 years will come, and we will still be here. If we didn’t think that way, we would be insufferable to be around. And yet…we all acknowledge that those years might not be intended for us. We acknowledge that while others go through middle and old age, we might not get there ourselves.

We know that most people don’t think about dying while they’re going through puberty.

So what is there to do but laugh? I’m in on the joke, but you can see it, can’t you? There’s something there, behind those eyes, something that knows that it’s funny and knows that it’s not. I’m just doing my best to live inside that something.

Day 637: Komen, Planned Parenthood, Women, and Sex

It would be impossible for me to ignore this entire Komen fiasco over the halted funds to Planned Parenthood, even though I would really like to ignore it. So rather than talk about Komen directly, or Planned Parenthood, or abortion or politics or pink, I want to talk about one specific topic:
Sex.
It has to be said—every aspect of women’s health, and often of women’s lives, is often reduced to this. We are sex objects at the same time that we aren’t supposed to actually like sex, or want sex, or make decisions about sex. Someone decides that an organization that provides a wide range of health services for women should no longer be given money, and the underlying reason (regardless of Komen’s overall goal to not give funds to groups under Congressional investigation) is that sometimes—after they have sex—women get pregnant when they don’t want to. If an organization that might save women’s lives is willing to accept this, it apparently does not deserve to exist.

And how does this happen? How do we get marginalized into talking about sex or sexuality when we should be talking about living or dying? Well, here’s an example of how that happens. We find out that we have breast cancer, and it is terrifying, and sad, and unbelievable. And then the world wants to save our breasts. Not US—our breasts. Our tatas. Friends joke about how they would definitely get them both cut off so they could get bigger and better ones for free. Doctors try to lead us to believe that deciding between a lumpectomy or a mastectomy is a “personal choice” that should be based on what will make us feel “more comfortable.” Nurses counsel us on dealing with our body image—or our husbands’ or boyfriends’ reaction to our new bodies—as if following the operation, we will be somewhat less than whole. Because something has happened to those beautiful breasts.

Or, the world wants to save our hair, to protect the world from the vision of a bald woman, through a relentless marketing blitz for wigs and hair coverings. Men cry when they find out our long beautiful red hair will fall out. Women tell us we are beautiful “anyway.” Everyone and their mother tells us “it’s just hair, it will grow back,” as if to say dear God it’s really not just hair, you strange bald freak, and boy I cannot wait until it grows back so I can look you in the eye again. The world even wants to save our faces. We are offered “beauty” classes to show us how to hide the discoloration in our skin left by chemo, how to draw on eyebrows where there are none, how to stop looking tired, how to stop—STOP IT GODDAMN IT! Stop looking sick!

And so often no one thinks, wow, she just lost a body part—she just had an amputation. That must feel different, that must be strange when you move your arm and notice something’s missing. No one says, I wonder if her head is just cold, perhaps I could knit her a hat? No one asks if it hurts, if you’re scared, if you’re still attracted to your husband.

Perhaps it’s too easy for me to say these things. I am sitting here now with a normal head of hair, a remarkably well-functioning body, the same face I’ve always had, and by God a decent looking pair of perky breasts of my own. A little scarred and tattooed maybe, a little dented in one place, but still perky, still mine. But I lost so many things myself, so many things—and none of it felt the way other people thought it would feel. I didn’t feel unattractive. I didn’t worry that Gabe wouldn’t want me. I didn’t think that being bald and scarred eroded my femininity. I thought I might feel those things, I anticipated those losses before they happened, but once I was in it, I didn’t feel that way at all. Because I really didn’t give a shit.

Because I had cancer. And I thought I might die. And I didn’t like being reduced to a perky set of tits, a beautiful head of hair, and a pretty face. I wanted to live and be healthy and know that my body could do the things it could do before I had cancer.

I wanted doctors to listen to me. When I said that chemo-induced menopause was the second most depressing thing that ever happened to me from cancer (after fear of death), when I said that my “impotence” (we don’t have a word for it for women, do we?) made me feel like someone else, when I said that having somewhat painful sex three times a week was unacceptable to someone who had been used to having wonderful fun sex every day, I wanted the doctors to look me in the eye and HELP ME. Not look away embarrassed, make sly comments about my husband, tell me he was a lucky guy, say just wait, tell me well now you know how it is for many women, or shrug and say at least you’re still alive. But Doctor this is crazy! I’m sure your husband understands. Excuse me, is he even here? Has anyone ever told a man dealing with impotence for any reason that it is irrelevant, unimportant, or the least of his problems? (For that matter, has anyone ever told a man with testicular cancer, well, you only have it in the one, but we’re going to take the other one too—you don’t need them to live? Has anyone ever proposed halting funding to clinics like Planned Parenthood because they provide vasectomies? Or pulled ads from NFL or NBA games because one of the players commits a rape?)

I wanted to think that if it is common for women with lumpectomies to have recurrent mastitis due to “mouth to nipple contact” (these MDs apparently can’t say “kissing or sucking your breasts”), someone could have told me that rather than treat me like I was 11 years old. I’m sure that husband everyone always seemed so worried about would have liked that too; he would’ve appreciated the opportunity to NOT pass on to his wife an infection that gave her a 103 degree fever, almost sent her to the hospital, required a 10 day course of strong antibiotics, and made her believe she had inflammatory breast cancer.

What’s more important in the medical field—infantalizing women by doing things like asking their husbands of 20 years to leave the room during breast exams because the staff is too embarrassed, or actually giving us good information and access to care? What person in the world, man or woman, thinks a mammogram is sexual? Why are men—often our closest confidants, the ones who shaved our heads, held our hands while we vomited, changed our bloody post-surgery dressings, and swabbed our hips with alcohol before they gave us painful shots to stop our white blood cell count from plummeting—not allowed in mammogram waiting rooms? Who really thinks that women will feel embarrassed to be around men in their hospital gowns when waiting for an exam that is excruciatingly painful and might tell you that you have a life-threatening illness?

Why is it always about sex?

Or never about sex, when you need it to be?

Women have breasts, and uteruses, and we are the only ones who get pregnant and we are generally the ones who get breast cancer. But as a society we have this need to see women as simultaneously over sexed (pole dancing for fitness, anyone?) and sexually naïve or incompetent (good girls don’t talk about those things!) We hammer information about pregnancy into teenage girls heads, push the pill on every 18 year old in the country, and don’t seem to care what the effects of such decisions are. We don’t care about the side effects, the link to triple negative breast cancer, the insane 80% rate of HPV infection among American women. (Can I get an Amen for being in the 20%? Yeah I was that kid in high school whose keys hung on a chain that said “No condom no way.” And yes, there was a condom inside that keychain). That’s why there are outcries against the only cancer vaccine that has ever been developed, because rather than focus on the amazing lifesaving potential, we are wrapped up inside someone else’s panties, worried she’ll do the wrong thing. I’ll say it again: Lenny, you can decide never to have sex in your life, or start having sex when you’re 13, and I will still love you and want you to live. I will not deny you access to Gardasil in order to protect you from your own hormones, your own desire, or your own life. I won’t do it.

Women are sexual beings, with sexual bodies. So are men. But men get to be just that most of the time—men. They are allowed to be fathers, husbands, friends, co-workers. And on the other side, so often, we get to be wombs, tits, hair, battlegrounds for other people’s repression or cluelessness or bullshit.

That’s what I see when I read an article about Komen and Planned Parenthood. I see myself, bald, tired, scarred up and tattooed, with no eyebrows, suffering from sexual dysfunction, walking around the streets of Chicago in my fashionable clothes, ignoring all the assholes staring at me. Walking around. Still alive. Still worth saving.

Day 477: Post-Cancer Exercise Modifications (And Other Life Lessons, Because I Can)

Now that I’m more than a year “cancer-free,” I often find myself questioning the purpose of this blog. Is it to leave my children a reminder of who their mother was if this shit comes back to haunt me and I don’t make it? Is it a platform for ranting? Is it just an excuse for me to write somewhat creatively every once in a while? Is it to tell something of my absurd little story so that some other young woman going through similar things doesn’t have to search the internet in vain for advice?

On the off-chance that the answer is anything approaching the latter, I’ve decided to do my own completely un-scientific, not based on any knowledge of sports medicine, list of modifications for working out during and after breast cancer treatment. You are supposed to stay active to save your life, lower the risk of recurrence, etc. etc. For those of us who were extremely active BEFORE finding out we had breast cancer, we might be somewhat skeptical of this. This doesn’t mean we won’t continue to exercise, even manically, under the assumption that we are doing what we can with what we’ve got to fight something no one really understands. It just means we wonder sometimes.

Before I got pregnant with Augie, and hell, during most of the pregnancy itself, I exercised for about three hours most days. That was partly because I was annoyed at how hard it was to lose weight after Lenny was born (out of whack hormones, related to breast cancer, perhaps?), and it was partly because I was frustrated at being unable to get pregnant for a while (again, with the hormone imbalance). I figured, if I’m not going to get pregnant, I’m going to get skinny, damnit. But mostly it was because I learned years ago that if I don’t get a lot of exercise, I can’t sleep. And when you are a chronic insomniac because your body is begging you to move move move! all the time, it gets tiring, literally and figuratively. Exercising compulsively is good for me; hell, it probably saved my marriage. When people remark on how Gabe must be really understanding because I get up super early all the time to work out and he is in charge of getting the kids up, I think on the one hand, well, they’re his kids too, and on the other I think, you have no idea. If I go early enough, the entire family hardly knows I'm gone. Besides, Gabe is all about me exercising. If I get four or five hours of sleep a night, I’m actually fun to be around. He’s my biggest workout supporter.

So I exercised like a nut for years and got breast cancer anyway. I don’t know that exercise will do anything to save me from cancer, but it doesn’t matter, because I like to do it anyway. Besides, I have a lot of very small clothes in my closets (yes, I use up a lot of the closet real estate in our house) and I don’t want to get new ones. Anyway, I continued to exercise to the extent that I could after two surgeries, and during and after chemo and radiation. I started new routines, took up new activities. My co-workers who saw me waddling into the gym 8 months pregnant saw me slowly walking into the gym when I was straight-up bald and going through chemo fatigue just a little over a year later.

Though I kept at it, I got frustrated by what I couldn’t do, and truth be told I am still frustrated. My left pec still hurts, making chest exercises difficult. My breast hurts as well, 14 months post-surgeries. I have an insane amount of scar tissue, and today I left the gym early because my boob was just killing me beneath the scar and I didn’t think it would be advisable to sit there holding myself in pain in the co-ed class. Mostly, I still have issues with the extension of my left arm. I can extend it all the way above my head when my hand is empty. However, I cannot easily bear weight on that arm when it’s extended, either with free weights or the weight of my own body. Doing this leads to chronic and sometimes scary pain in my pec, breast, and arm. I’m half-convinced that overdoing it with my arm and chest is part of what led to that awful mastitis I had over the winter, though the docs all said that's not true.

So I’ve learned a few things through trial and error, and though those things are specific to me, I’ve decided to share in case anyone finds them useful. I will insert a caveat though: If you have had breast cancer and you try these things and you injure yourself, don’t blame me. I’m a business economist, not a personal trainer, so listening to me is probably not that advisable. I’m just a really opinionated business economist, so here goes Katy’s list of “if you have breast cancer and would like to exercise, but you can’t do this, do this other thing instead:”

Can’t do:

1. Push-ups. Do planks instead. You might be weaker in the chest, but somewhere underneath it all you will get a core of steel. (I like to eat, so there won’t be any 6-pack on this body anytime soon, but I know those muscles under there are strong!) I have accepted that I might never be able to do push-ups. This is ok—it’s not a necessary condition for a happy life, after all. The main issue in a classroom setting is to not distract anyone else by standing or lying on your back, bringing attention to the fact that you are being a smart-ass and not doing push-ups. So plank it as long as you can hold it.

2. Overhead tricep extensions: Easiest modification of them all: just do kickbacks instead. Same benefit, much less pain.

3. Lat pull-downs: do these straight in front of your chest rather than with arms overhead. This works different muscles, but it still works. You are not sitting there with your sorry ass on the couch, so go ahead. Today the gym intern made a general comment, knowingly directed at me, while we were doing this: “Make sure your arms are ALL THE WAY OVER YOUR HEAD.” The gym manager glanced over at me quickly. I gave her a reassuring look. No need to bring breast cancer into this 22 year old girl’s state of consciousness; I can take the criticism in stride. Now in general, I have finally graduated to being able to do normal lat pull-downs overhead, but I have to use smaller weights or a tube with less resistance. Today my breast hurt, so I just modified and held my arms straight out. Follow your instincts.

4. Squats/lunges with weights for strength: When I first told my gym instructor that I had cancer, she said she would work with me on modifications. She said, some things you won’t be able to do, but other things you’ll always be able to do, like lunges. This is true. Breast cancer does not affect your legs (unless chemo makes you too weak or gives you extreme neuropathy or spreads to the bone, of course). My issue was that I always held two 10 pound weights for extra strength. Post-breast cancer, until very recently, I could not hold the weight straight down at my left side without hurting my arm. So I used ten pounds on the right, five on the left for a while, and totally destroyed my back due to the imbalance. Then, for months I used a lighter (12 pound) medicine ball instead, holding it right out by my belly so my arms were bent. That way I got the benefit of the weight-bearing exercise but I didn’t wreck my arm. I have recently graduated to using weights again, albeit 8-pounders.

5. Rows: Here the modification depends on your injury. If my general chest/breast issue was the problem, I would just do something else entirely, like crunches. If my chest was feeling ok but the arm was giving me trouble, I’d do the row, but with less weight/resistance, and alternate. Today I can usually do them normally.

6. Chest-flys: This is just not advisable soon after surgery. Your breast will feel like it’s on fire. It ain’t worth it. If your class is doing this while lying on the ground or a ball, do regular chest presses but with lighter weights than usual. If that still hurts, sit on the ball, or kneel on the ground (again, try to be less distracting to folks) and do hammer curls instead. I always default to planks or bicep exercises when I can’t do something else. All is not lost; you will at least have those Michelle Obama arms going on. (Here’s a shout out to my husband, one of the few men in America who really likes and cares about women’s arms. I live with comments like “Damn your arms are looking hot baby!” Is this normal?)

7. Side planks: Again, not very advisable on the affected side. If you’re up to it, do the plank on that side on your forearm (I always do side planks on my forearms, not extended arms—these are really hard for me on either side, cancer or no) but rest your weight on your knees rather than extending your legs out and up. You will still work your obliques. If that doesn’t work, do a regular plank.

8. V-ups: Don’t do it. This is just kind of unnecessary if you ask me.

9. Shoulder raises: do these exercises—I think it actually really helps with range of motion after lymph nodes are removed. Just use tiny weights if it’s close to post-surgery. Or don’t use any weights at all—the motion of moving your arms straight ahead or straight to the sides is good for you. If anyone looks at you weird because you’re doing a side raise with invisible weights, just give them that death stare with your big eyes that look scary underneath that bald head. That’s what I did, and believe me, it works.

10. Dead lifts: This seems obvious, but if it hurts your affected arm too much to hold your arms "dead," just bend at the elbows and hold the weight by your chest. You will still work your hamstrings and stabilizers.

11. General weight-bearing exercises or arm exercises: If your arm bugs you, use less weight. This is common sense; don’t do what I did and use the same, higher weight on the “good” side because you think you have something to prove. You will get strong muscles on that side and then your back and shoulders will kill you. So use less on both sides. This is not a contest.

12. Running: I have no advice here. I hate running. I even had trouble walking right after surgery because any motion or bounce was excruciating in my breast, though I’m small-breasted. I still took long walks every day, however, and suffered through it. Sometimes that’s the best advice, I suppose. Just suffer. It won’t last forever, probably, or at least theoretically.

13. Swimming: don’t listen to me, listen to your doctor and his or her advice on getting wounds wet, contracting germs, etc. I stopped swimming and doing water aerobics during the latter half of chemo and for all of radiation (it was forbidden during radiation). And no, I didn’t get fat.

14. Pilates or yoga: do these, especially during chemo and radiation. Now those who know me know I hate yoga. I need to be doing something faster or else I get bored, so I did pilates several times a week during treatment. The point is, your joints will hurt at different points during chemo, and your skin will feel tight and painful during radiation. You will be crazy tired, not tired even—fatigued in a way you didn’t know was possible. The overall body work and stretching with pilates and yoga will help. Trust me. If you need to bow out of certain exercises or poses, do it. Just pick a studio or class where people aren’t judgmental jerks and you’ll be fine.

15. Lifting heavy things: don’t be an idiot. If the heavy thing is not your child about to be hit by a bus, it probably doesn’t need to be lifted by you while you’re still recovering. Not today, maybe not ever. Just flirt with some guy and he’ll do it for you.

16. Getting out of bed: hey, if you can’t do it, you can’t do it. Your muscles won’t atrophy in a day. Let your husband/mom/neighbor/friend/cousin take care of the kids or the chores, and get up tomorrow, or later tonight. Watch some stupid shit on tv. You have cancer. You don’t have to follow the normal rules.

Wow, it felt kind of good to get all that down. This makes me think that I should write down some other general-life breast cancer modifications:

• Underwire bras: Just chuck them. I was the lingerie queen, the girl who wore matching lace bras and panties when I was 14. Breast cancer put the kabosh on all that. Wear soft-cup bras, or nursing bras even. Don’t wear one at all if you don’t have to, but I would say that the more your boob hurts, the more support and compression you actually need, even if it sounds illogical. I know this bra advice doesn’t work for women with mastectomies. Sorry—I didn’t have one, so I have no clue and won’t pretend that I do. My boobs are basically the same size and shape, which makes me think that the large amount of tissue that was removed on the left was just replaced by scar tissue and firmness from radiation. So I can wear cute bras now, but no underwire.

• Food and nutrition: When the kind nutrition specialist meets with you during chemo, listen politely and then laugh when she walks out the door. When all of your well-meaning friends tell you what you should eat to maintain energy, smile and nod. Your job is to eat whatever the hell you can so that your weight doesn’t get too low and your body can safely absorb the poison. If that means you eat only pudding, or you eat weird things like Frosted Flakes and fresh spinach (my chemo dinner of champions), so be it. When I got down to 110 pounds after my first round of chemo, from 117, and everyone worried about me, I listened to them tell me I needed to ingest more calories, that I needed to eat more than fruit and rice. I secretly thought, screw you. I have CANCER. I’m doing CHEMO. I’m not going to starve to death; eating is the least of my problems. I will eat what I can stomach and worry about the right diet later. Your body helps you with this process. I actually craved goat cheese and spinach all the time on chemo. These things are mild and have protein and if you eat them, you will be fine. Your body isn’t stupid. Whenever I complain about the little pooch I have on my stomach, Gabe first scoffs and asks what the hell I’m talking about. Then he says women are supposed to have some softness, that’s supposed to be there, if you have nothing what would protect you from famine? (Can you tell this line of argument comes from a guy who was often hungry as a kid?) At 110 pounds, I went back to that thought. I said well shit, here it is. This is my chemo famine. My body will protect me. And it did. I got weaker, but not too weak. I made it through.

• Sex: do this as often as you want, as vigorously as you can, if and when you are able. If you are in the nadir portion of chemo, you might want to abstain for a few days, lest you get motion sickness from the act itself (don’t laugh, ya’ll know that happened to me). If you go through early menopause due to chemo or surgery, use silicone-based lube. All the other stuff just doesn’t compare, and no one will tell you this. If you don’t have an understanding partner, dump him or her. It is that person’s job to modify and figure out what works for you so you can enjoy sex again. If you are lucky like me and you completely come out of menopause to be a woman with monthly (if irregular) cycles and a surprisingly high sex drive, say hallelujah and have fun! When doctors and friends tell you that sexual problems are the least of your concerns, that at least your husband still wants you, or some other bullshit, realize that at that moment in time, those people are assholes. Maybe not all the time, but right then, they just suck. It’s important—don’t let anyone tell you otherwise. Nothing—not having cancer, not weaning my son, not being bald, not mentally preparing my own memorial service—made me feel as old and depressed as the sexual changes I went through from chemo-induced menopause. The fact that I came out of it is something that I revel in every day, or at least every other day, depending on how tired Gabe and I are that week.

• Parenting: don’t try to be superwoman, or the parent who protects her child from all things cancer-related, or the one who is saintly in the face of tragedy. Don’t be a martyr. No matter what you do, you will never protect your kids from knowing you have cancer, or from knowing that cancer is very very bad. So just be the parent you were before, to the extent that it’s possible. If you didn’t do crafts with your kids before cancer, by God don’t start doing them now. Your kids will really think you’re dying (at least that’s what mine would think). Modify your expectations of yourself and what you can do as a parent on a daily, or even momentary, basis. I received so much conflicting advice about what to tell Lenny; no one could have suggested that I just tell her the whole thing, kit and caboodle, in the middle of dinner, starting with, are you wondering why the phone is always ringing? No one could have predicted our collective relief when it was out in the open. Similarly, no one could have prepared me for the moment when my hand was shaking too much to feed Augie his lunch last July. I was utterly shocked that I couldn’t do it. But shit, the child needed to eat. So I put my elbow on the highchair tray, steadied that arm with the other hand, and fed him. He’s a crazy little bruiser now, so no harm, no foul. All I'm saying is, if luck is in your corner you will live a while after this, at which point all the other things are but minor considerations that your kids will one day forgive.

• Moods: Do not expect to keep everything together all the time. Cancer taught me to carry Kleenex in my purse. If my body wasn’t too bone-dry on chemo to physically cry, I just wept all the time, for months. It was like an alien being had invaded my stoic little body. This might manifest differently for you. You might feel angry, or hollow, or manic, or terrified, and all these things might come out of nowhere. Don’t begrudge yourself this new aspect of your personality. The rest is still in there, but you just got buried under some massive bullshit and you need some different tools to find your way out. So again, cut yourself some slack.

• Hair: Let it go. Literally. Being bald isn’t that bad. If you do decide to wear a wig or a scarf, make it a point to learn to study your face. You will see it with more clarity when there’s no hair to distract you.

• Friends: keep some. It’s important. Maybe they’re old friends you haven’t seen in years, maybe there are only a few you can really count on when the shit hits the fan, maybe there’s only one person who still treats you the same. It doesn’t matter, just keep those folks close.

• Ridiculously insensitive or just plain weird comments: Let them slide. People are clueless in general. When it comes to something like cancer, especially if a young person has cancer, the whole of the world seems to take leave of its senses. You must modify your reactions to these people, mostly by acting as if they are not even there. “Hell no, you’re bald!” “All of my aunts died from breast cancer.” “Your head isn't shaped funny, at least.” “You look great! I wish I could lose weight that fast!” “You have breast cancer? Your boobs look nice. And symmetrical.” “Oh. That must run in your family.” I mean seriously. If you have to physically shut your own mouth to stop that witty reply from coming out, do it. Unless that reply is my personal favorite, in which case I give you permission to respond to a compliment on your looks with “Thanks, but I don’t have cancer of the face.” It’s great to still feel beautiful while going through this crap, but as the last picture here attests (taken a few days after my first surgery), breast cancer is one hell of an ugly disease.

And finally, don’t modify too much. You have cancer, or you are recovering from cancer and its treatment. You’re not dead, not yet, at least. Keep exercising, eating, sleeping, hanging out with your kids, talking, having sex, working, bitching in cyberspace, all to the extent that you can for as long as you can. If nothing else, you’ll get some of that weight of the world off of your chest. Even if said chest is bruised, or scarred, or burned, or tattooed, or lopsided, you can get some of that weight off just by being yourself. That’s why I’m glad I’m not a Pollyannish, sunshiny, cheerleader type now that I’m supposedly recovered from cancer. If that were the case, cancer would’ve won. People would say, where in the world is Katy Jacob? Right here, son. Now shut up and stop asking me questions!

Day 354: Resurrection Day

As I think about how to begin an Easter blog, I can't help but start by saying that those of you who know me well know that I am not a religious person. On holidays such as Christmas, this is not really a problem, as the themes of family and giving to others and generosity and empathy don't have specific religious connotations. While we exchange gifts and have our own host of Christmas traditions, I don't feel that we are particularly commercial about the holiday or that it's hard to explain to our kids what Christmas is about. I have explained to Lenny about Christ's birth, and why that is important in our culture. I'm probably one of the few non-religious folks out there who's read the Bible cover to cover, so I can handle that.

Easter is entirely different. We dye eggs, and do Easter egg hunts, and I buy candy, and we get together with family members whom we don't see very often. But when I told Lenny that Easter is not really about candy or bunnies at all, she asked me what it was really about, and I was at a loss as to how to explain it. In part, I am afraid to bring up death with her at all right now. We are reading Charlotte's Web, and I don't want to get to the end, because she is so sensitive about death due to my cancer (even though we never connected those two things together for her, she's not naive about it). But I also just have no real words to discuss resurrection, to open up concepts that will bring so many other questions about what our familiy believes.

Normally I enjoy these types of challenges, but honestly I'm just tired, tired of the personally morbid thoughts that those types of conversations that we as parents have a responsibility to have with our kids bring into my consciousness right now. So I let it go for this year. I suppose that's forgivable. We had a wonderful holiday. I gained three pounds in one weekend from all of the food--and candy--that I've consumed. Augie did a great job on the egg hunt, considering this is the first Easter when he could walk. Lenny read the note from the Easter bunny, counted the eggs, helped her brother, picked out her own outfit. Cancer seemed so far away, even though it isn't, considering that mammogram I have coming up on Thursday. I honestly don't know how I'm functioning on any sort of level that doesn't involve obsessing about that scan, but somehow I am. I try to act as if cancer's in the background in our lives, as if I've been given some new life, resurrected as some different, healthy, short-haired woman, but as I've said before, there are always reminders.

We were going through the Easter pictures and I remarked that my hair looks so brown in pictures, though in person it looks red. Lenny said, I really hope that I never get cancer. I tried not to wince, Gabe tried not to shed a tear. I said, why, because of your red hair? But mine is the same color, it just looks different since there's not much of it, and mine was always darker than yours. Yeah, she said, I guess. It's not really about the hair, and I know that. She looks at me and thinks that cancer made me different, that I am a different mom, and she doesn't want that to happen to her. I'm glad at least that she isn't yet afraid to voice those concerns.

It can be hard to talk about these things without breaking down, especially when in the back of my mind I wonder if this is all some big cosmic joke, this hair, this weight gain, this health, and if I will find out in just a few days that I am going back to do it all over again. Of course everyone tells me, but you caught it early, you saved your own life, you are stage one, you will be fine. I hope so, but I don't know so, and no one else does either, no matter what we tell ourselves.

I've been thinking about this a lot, this way that we need for cancer to end on a positive note. And I do mean the collective "we." Obviously I need to believe that, or it means the end of my life, and my family and friends need to believe it because I am important to them. But as a society as a whole we seem to require it, to focus so much on the survivors, that others can be pushed aside, willfully forgotten, even resented for not being able to win the fight. It is grossly unfair.

In the last week I have had the unfortunate opportunity to learn what survivor's guilt means. I always thought that it had to do with feeling guilty that you are alive when someone else in the same situation has died. That's not it at all. Survivor's guilt means that you feel guilty that you are glad to be alive, that it isn't you who has died. It makes you feel like a really terrible person. It feels unforgivable.

Last Sunday, a team member from Row passed away. She was 43. I never had a chance to meet her, because she has been very sick since I started rowing. Four years ago, at age 39 she was diagnosed with Stage one breast cancer (meaning no lymph nodes involved) and she did a lumpectomy, chemo, the whole thing. She later found out she was BRCA positive and had a double mastectomy. A year later her cancer returned anyway and metasticized throughout her body. She left behind a husband, a five year old daughter, a lot of friends and family. Her name was Cindy Gerstner and she really seemed like such a wonderful person from everything I heard about her. I felt very sad and angry about this, and guilty that I couldn't attend the funeral.

But I also felt like a completely shitty person for how much it scared me to learn the details of her being stage one and having a tragically severe recurrence so soon after she ended her treatment. I felt terrible thinking "I hope that doesn't happen to me." What right do I have to make this tragedy about me, even during that split second before I stop and remind myself that this is not about me and my shit but the end of the universe for someone else, the end of a childhood with mommy for a child who isn't mine, the end of so much for other people--not for me? How am I any different than all the people who turned my cancer experience into something that had to do with them, who used it as a way to reflect on their own lives, who shunned me or ignored me because just looking at me scared them? God, it made me feel shallow, and hollow, and weak. I feel like a heel for writing about this here at all, because by doing that I am making it worse, and I am using a life that isn't my place to discuss for some purpose of my own. I don't mean to do that. But I get it now, this guilt. And I am truly sorry for the loss of Cindy Gerstner. The Tribune ran a very nice piece about her that I would encourage others to read: http://articles.chicagotribune.com/2011-04-20/features/ct-met-gerstner-obit-0421-20110420_1_rare-fish-species-cancer-survivors
I thought I was somehow above this notion that survival is the only acceptable cancer solution that we can handle. I thought that the way I have contemplated my own death and even planned for it in some weird ways protected me from the steep denial that I still feel about that concept. I wish that I believed in some kind of life after death, some kind of resurrection, that I could honestly tell my daughter that if cancer took me away that I could see her again. But I don't believe that, so every special moment or day still has this kind of painful poignancy. And it brings more guilt. I wanted to read the paper this morning, and Augie started hitting me, something he does when he wants attention. He got in trouble, then apologized (me Augie Sorry mommy) and then I continued to try to read the paper. Gabe told me I should play with him, that sometime soon he won't want to play with us anymore, that he'll be like Lenny and be in his room all the time.

I felt so guilty, even if that wasn't his intention, even though I love the fact that Lenny steals away into her room all the time. I loved doing that as a kid, creating my own little world all by myself. I don't particularly miss her, because I know she's there. I'm not a mom who is in my kids' faces all the time, doing crafts, bonding. I'm there, and I love them and cook for them and read to them and I'm trying to stay alive for them, but sometimes I wonder if the way I do things is the right way or if I'm dooming my kids to remember me standing at the kitchen sink, if they remember me at all, when they'd rather remember me rolling around on the floor with them.

Then I tell myself that my kids would rather not have to remember me, because either way, they would rather get to be normal kids with a normal mom who lives to be old. They'd rather think that I'm better.

That's what we all seem to need from this thing, to get better. I was really struck by this the other night when we watched Love and Other Drugs on netflix. When Anne Hathaway's character says, you need me to be better so that you can let yourself love me, I actually said out loud, huh, every person with cancer feels that way. Then I said, oh, I know that wasn't true for you, babe, but I know that a lot of people couldn't deal with me when I was in the middle of treatment. A lot of people were waiting for me to get better so they could talk to me again, just like they did when I was nine and I was in a wheelchair. What happens when you never get better, when your cancer treatment lasts for the rest of your life, you never get out of the wheelchair, your epliepsy is uncontrolled and devastating?

I'll tell you what happens. You lose a lot of people, even if you shouldn't. But you still deserve to be loved and you still feel the same. You are still yourself, but many people will treat you otherwise. Even a movie that was trying to make this point couldn't move past it. This young woman with Parkinson's was only symptomatic during the few minutes of the movie when the romantic relationship was in question. For the rest of the time, her lover can say he accepts her condition without suffering the consequences of what that means, since it doesn't seem to mean anything for her except that she has some artsy sense of ennui that leads her to sleep with all her doctors (wow, is that a completely repuslive thought to me. how would that come up in any kind of conversation?). There was one post-modern scene in the film when people who must have really had Parkinson's were talking and joking about it at a convention. I thought, here we go, that's how folks with Parkinson's really talk, really stand, gesture, etc., and they're going to go there in the film.

Nope. She had a mild case, she got the guy, they had great sex (I'm sorry but I felt they had zero chemistry which was a shame, given the great amount of eye candy involved. Gabe even said wow, Anne Hathaway is such a beautiful woman, why isn't she sexy? So maybe we were missing something in the film?), they lived happily ever after.

As I thought about this I felt guilty again. So far, that's been me. I'm the one with the relatively mild epilepsy, who was still able to do what she wanted with her life in spite of it. I never had brain damage, I am able to drive, I can take care of myself and my children. I'm the one who learned to walk again, who talked to the guy holding a gun at my head so I could get my keys out of my bag (so he wouldn't have my keys and my driver's license, thus gaining access to my house) and came away unscathed. I have this desire to say, and I'm the one who had cancer and lived a long time. How is that fair?

Then I need to pinch myself. I'm not that person, not yet. I'm not out of the woods, and yet I so desperately want to believe that it is all behind me. Is it true that I was just in menopause a few months ago, I thought as I bought maxipads at the store today because I don't keep extras anymore, as I'm half convinced each period is a sham. Is it really true that I coudln't have had that iced mocha a few months ago without spinning into a horrible series of hot flashes? Was I really bald? Did I really have three cancerous tumors? Did I really wean my son almsot a year ago in just a week, not because I was tired but because I had some damn breast cancer? What the hell is that?

There's guilt again, and I feel it as I write that about weaning Augie. For the last few days we've been trying to wean him off the bottle. Yes, my son is almost two and he drinks a bottle of warmed milk before his naps and at bedtime. Not at daycare, just here. I don't mind it an nap, but he needs to brush his teeth and not have milk on them all night, so we've been giving him a bottle of water instead. Last night he fought it like mad, but today he was ok. He will not drink milk out of a sippy cup--only a bottle or a normal cup, no top. So either it's the bottle or a total mess. Soon I'm sure he'll give up the bottle of water, and it makes me so ridiculously sad, and angry too. Why did we have that taken from us? I actually really liked nursing him, unlike the struggle I had with Lenny. He just looked at me tonight like he was saying, well, so that's over, huh? For a split second it reminded me of those hurt looks he gave me last year in the mornings when his dad fed him the bottle and I didn't even go in his room because I couldn't bear it. But then he smiled at me and offered me his pacifier (he had two of those in his hands, and I don't give a shit if he has them until he's four). He must have known I could use some comfort, even if I did my best to hide it.

So that's how it is over here. It's normal and it's fun, then it's sad and sentimental. It's scary, it's mundane. There's guilt and there's walking to the park. There's thinking about explaining the concept of death and resurrection to your child and there's me turning to Gabe in the middle of a movie and saying, do you think people with Parkinson's can take the pill? Because she must be on it, the way they just start going at it all the time and never use a condom.

Suspension of disbelief, he said.

And therein lies my problem. I've always had trouble with that. I want things to be like they are, to be real, to be true. For the last few months, I have had a new life, a resurrection of sorts. But that has only been possible because death is lurking around the corner, and it isn't particularly positive. It's somewhat daunting actually, and there's a lot of pressure, wondering what I'm supposed to do with this new life that's just like the old one, albeit more "felt." I feel my life more, but sometimes all that means is that I feel more shocked and terrified at the thought of it ending soon, later, at all. And I think that's ok. Cancer doesn't turn you into Sartre. Life still matters, the small things are still important.

I feel guilty about my relationship with my son and then I feel this weird pride when he points to the El tracks several blocks away and says "choo choo." We live near the metra, not the el, and the metra runs along the ground on the south side. He has seen the el when we drive on the highway, but there was no train on the track. He saw the rusty track in the distance, among a million other things that there are to look at in the middle of downtown Chicago. He knew there should be a train there, and I wondered how he could know that.

Gabe said, you know how he knows that, you've said it yourself on multiple occasions. Oh I know he's no dummy, I said. No Kate, that's not it. He's been here before, he knows what's going on.

I don't believe that, not really. But I have no other way to explain the things that he does, so I think, nah, but what if...what if?...

Happy Easter.