Monday, February 24, 2014
Day 1,348: Monday, Monday
It was a typical Monday morning. I had trouble sleeping the night before. I was up before 5, cold and alone in my king sized bed because my daughter had also had trouble sleeping, and my husband had gone in to comfort her. He came back to bed and I snuggled into him. Within a few minutes, I was up, getting dressed for the gym. The endless winter greeted me as I heated up the car. I was the first to arrive. When the door was unlocked, I went inside and realized that I was the first person to reach our collective destination: we had a challenge laid before us in January--we had three months to "ride across America," to spin enough "miles" to get from Mount Rainier, Washington, to the lighthouses of Maine. I was the first to make it to Maine, out of everyone, chemo be damned. I placed my last star on the board and started bragging, as it is only acceptable to do in a gym with other crazy people who are up at dawn on a cold, icy Monday morning.
We started to ride. We were sprinting. I was thinking about the time when Gabe and I went to Maine, for my 28th birthday, when we had been dating a handful of months and were newly in love and our lives were laid out before us like the lighthouses beyond the black rocks. And then, I began thinking about a conversation we had last night, in bed, about whether or not he saw me as disfigured. I don't normally see myself that way, but for a fleeting moment, I did. And he got very quiet and said nothing. I asked if he missed my old breast. I thought he wouldn't answer me. And then finally he said "a little bit. but it's not about how you look...it's just..." and his words fell away and I knew what he meant: I miss how it was before--before we knew. Before it happened.
And then, out of nowhere, came the memory of weaning my son because of my cancer. There I was, flying on the bike, when the crushing memory of how hard it was for me to even look at him in the mornings when my husband fed him out of a bottle enveloped me. I remember the look on my son's face, full of adult confusion and, yes, even hurt. I felt the weight of the things that have happened, and I began to cry, right at the moment when the instructor said and now we are climbing. So I climbed, little legs moving faster than everyone else, including the man who was right next to me, the one who was one stop behind me on the ride across America, the one I am always competing against as we stare at ourselves in the mirror. I was wiping away the tears, pretending they were sweat, and I saw him seeing me, and I thought, no I can't do this here, not here, not now. I tried to just pedal my way out of that memory, but it didn't work. I needed something else.
And so I thought of the movie Gabe and I finally watched last night, the movie that was intended to be bad and should have been so bad that it was good, but instead was so bad that we got distracted by each other's bodies and didn't finish watching Sharknado. And then it hit me, that line of dialogue that would save me from myself one uneventful Monday morning: "Beverly Hills' emergency services are second to none!" And then it was over, and I was laughing, and several people in the gym turned to look at me, because I was laughing at something they could neither see nor hear.
The ride ended. We all went home. My husband had made my coffee (he doesn't drink it himself, but he makes it for me every day), and he had fried me an egg. I was ravenous. The kids were eating, getting ready for school. My daughter told me about her bad dream, which involved the roof falling off of our house, meaning we couldn't live here anymore. I gave the usual morning orders, the ones the kids act as if they have never heard before, every day of their lives. Finish your breakfast. Brush your teeth. Augie, get some pants on. Here's your lunch.
And I settled into the morning, still sweaty and warm, thinking about lighthouses, imagining myself fleeing the endless New England winter, starting the ride again, heading back to a place that is sunny and warm, using everything I've got to make it back there. Just like any other Monday morning.
Saturday, February 15, 2014
Day 1,338: Proposed
So, I got engaged yesterday. To my husband. As some people know, I decided a few months ago that we've been through so much together that we should get married, again, on or around our upcoming ten year anniversary in October. I mean, by the time Gabe and I had known each other 3 years, we had both changed jobs, I graduated from grad school, we bought and sold a house together, got married, and had a kid. It went like this:
Meet at 27, date for 7 months, have conversation about living together wherein I told him that I had no motivation to give up my independence because I loved living alone, unless it was for something more permanent and he said, yeah I thought maybe we could get married. So, move in together at age 28 after dating 8 months. Get officially engaged at age 28 after 10 months of dating in a way that will become an epic and legendary story in your family. Sell your condo 6 months after getting engaged and buy a house in a neighborhood you had never even visited. Change jobs before than even happened. Get married at age 29 because you didn't want to get married in the summer when you both would have been 28 because you thought oh how about October no one gets married in the fall because you are a clueless mess when it comes to anything like WEDDINGS. Get married almost exactly a year and a half to the day after you met, and have a kid less than a year and a half later.
It was meant to be, I suppose, though I'm not sure what that means. I reminded Gabe yesterday about a conversation we had when we had been dating two or three weeks. For some reason, after a Wilco concert, he decided to talk about relationship deal breakers. For the life of me, I can't remember how this conversation started. But I said, well I have had a lot of relationships, including one really long one, and it's different when you enter in a relationship when you're 17 versus 27. You know more about what you want, and you don't want to spend years trying to find it. You figure it out quickly. He kept pestering me about what my dealbreakers were until I finally said, well, for example, I think I want to have kids and so if someone didn't want that at all, I would believe him. He said he didn't want to have kids. I figured it was too early in the relationship to talk about such deep things when we were having fun so I said, we need to talk about something else. On went some random conversation until we had almost reached the car (we were walking along Michigan Avenue this whole time). Out of the blue he said, well, I guess I might change my mind if I met the right person. I said huh? What are you talking about? and he said, I mean, about kids. If I met the right person I would feel differently. Like, I would have kids...with you.
Two weeks in, and the deal was basically sealed. Who knew? Later he told me that he REALLY knew he wanted to marry me when we had been dating about two months and we went to Baraboo, WI for his 28th birthday, and as we were sitting watching a particularly glorious sunset on the beach, I said some nerdy shit about orbital motion. Ah, the REAL way to a man's heart.
The thing is though, I'm not sure we really enjoyed the PROCESS the first time around. We were so clueless and so many things happened so fast that we just ended up fighting over stupid things and almost ruining everything. Gabe felt some weird pressure about how to be the right kind of husband, I wasn't sure how to be a wife, and we were dramatic and ridiculous (more him than me--that's just the truth). Our wedding was great, our kids are great, but I think we felt like we were in a whirlwind and so there was the DRAMA.
And then...there was the REAL drama. You know, the cancer. The cancer that CAME BACK.
There was death, looking right at us, lingering in the corner right next to life. And there it was...AGAIN. So many things have happened. And yet somehow, through all of that, the initial drama, the kids, the cancer...it's like we've been on a really, really long date for the past 11 years.
All that stuff people say happens when you've been together a long time? It hasn't happened. It's not like 6 years in, I figured out he could be annoying. I knew that shit immediately. It's not like we stopped going on awesome and epic dates, because our awesome and epic dates look almost the same as they did when we met. We used to bundle up and go on walks to the park to play catch with a football in the snow AS A DATE. The guy took me to a drag queen show on our third date and we went bowling and to high school football games and...yeah. the same. We still have sex every day. That whole part where he starts to ignore you or neglect you? Huh? Are there other people who aren't married to eternal adolescents? OK, well, not in this house. I mean, the guy was all excited and giddy yesterday and he still is, and he is all "I am so excited! I can't believe it! We're getting married." I don't have the heart to tell him we've already BEEN married for more than 9 years. At dinner last night, he told me that with a few exceptions--cancer and some drama he had caused himself by being particularly stupid--this, what we have, is all he ever wanted.
And while everyone knows that I will never say that cancer brings people closer together, in some ways, it has. We don't love each other more because of cancer; we love each other more because we have seen each other at pretty much the absolute worst and here we are, both still around. We have learned to appreciate the huge differences between us. I mean, someone has to be emotional, someone has to cry, someone has to be nurturing, and it sure as hell ain't me, babe. Someone has to be a stubborn, manic badass, right? Can I take that role? Thanks. Also, there is this. And by this I mean THIS. Blogging has enabled me to say things to my sentimental, always complimentary and sappy and cheesy husband that I would never say out loud, not because I don't love him, but because that's how I am and how I have always been. I know he appreciates that, and it's good for me to give that to him without having to change myself. Plus, now I know he's attracted to me even if I'm bald or my breast has been cut off. And we both roll our eyes at some of the stuff that made us annoyed with each other before, and we roll our eyes at other people's weird drama as well, because at some point down the line, SHIT GOT REAL, and we stopped inventing problems.
So, we're having some real fun with it this time around. I'm going to wear an actual white dress, maybe two of them. He's going to get a tux this time (I've never seen him in one!). We're doing this whole shindig at our house, and we will probably order fried chicken from the grocery store, buy a sheetcake from Costco, and walk down either the hill if it's nice out or the stairs in the house if it's not, together, to the orchestral version of the Buffy the Vampire theme song once again, and we are doing this all on the 30th anniversary of the day I got hit by a car and lost the ability to walk, so it will be ALL US. And our kids.
I picked out a few rings online that looked kind of engagement-like; this is hard, since I hate the diamond industry. So I showed these to Gabe--because he said at the very beginning of this whole thing that we can't get married again because he hadn't proposed to me (again) yet. At some point he apparently picked a ring and ordered it--a white sapphire. He made plans for us to see the Joffrey Ballet on Valentine's Day. I had a sneaking suspicion he might propose to me then (ten years ago, he proposed the week before Valentine's Day because he thought that would be too "typical." See what I mean? We were taking ourselves WAY too seriously). I got him a Valentine's Day card that involved sharks eating people and laid out the card for him at the breakfast table, with the kids' cards too.
Everyone else opened everything, and I thought I was getting nothing. We were eating cereal, all of us in our bathrobes. Gabe whispered to Lenny and she went running downstairs to the basement. She came back with a big pink construction paper envelope. Inside was the construction paper card Gabe made me, next to a construction paper package. I opened it, and there was a ring inside. Gabe was down on one knee and he was crying. He looked like he wanted to say something and didn't know how. And then he said "Kate, you're the most amazing woman I've ever met. Will you marry me?" The kids sat there looking both excited and dumbfounded at the same time. I laughed and said yes. And then I read the card. It was signed
"Love, Gabe. Your once, current, and future husband."
We will see some of you on October 11. Be ready.
Tuesday, February 11, 2014
Day 1,334: Choice
I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice.
The thing is, I think that the whole concept of choice is actually just privilege in disguise.
When we regard our privilege as a choice that we deserve, we cause all kinds of problems. We begin to believe in the concept of meritocracy, wherein everyone gets what he or she "deserves." We take advantage of social institutions when it suits us and then decry every other institution as an affront on our free will--schools, hospitals, governments, banks.
Let me just say right now that I am a supporter of institutions, of society. I am not a person who believes that the family is beyond reproach, because I know that not all people come from functional, non-addicted, non-abusive, comforting, intact loving families. Some people's families are the cause of the majority of their problems. Some people are destroyed by their families, by their churches, by the very places and people whom society pretends are intended to protect them. And this does not just happen to "other" people. It happens to us, to the people we know and love. And so there is a place for institutions, a place for spaces that exist to help people who need it, especially when "choice" is not choice at all.
If this all sounds too obtuse, let me give some examples. When I was in college I took part in an Urban Studies Program in Chicago for a semester. One of my classes was "Women in Health." It was mostly an experiential learning class, wherein we visited women's shelters and other places and learned about public health issues affecting women. I felt guilty in this class all the time, because I often felt angry. It took a while to figure out why. We were being "exposed" to this life that we supposedly knew little of, this life that included poverty and a lack of health care options. We were supposed to think about how lucky we were in contrast--we were not supposed to RELATE. One day, we were being lectured by a midwife, who was teaching us about natural birth and all the wonderful "choices" that the evil medical establishment didn't want us to understand. She said we should think about birth options the same way that we chose our respective colleges--based on what was best for us and what fit our value system. At that point, I felt the need to challenge her deep in my 20 year old bones. So the following conversation ensued:
K: Well, I don't know about that. I didn't choose a college based on what was best for me. I went to the place that gave me the most money. I didn't even visit it first.
M: Well, um...
K: So, how many women do you serve every year?
M: Well, about 100.
K: Huh. Thousands and thousands of women give birth in our hospitals in Chicago. And do you accept everyone?>
M: I'm sorry?
K: Do you accept everyone? What about me? I had epilepsy as a child, which is a preexisting condition and can come back at any time. I am considered high risk for a lot of medical procedures. So, could I give birth with you?
M: No, I'm sorry. We aren't equipped for that. You would need to go to a hospital.
Do you see what I mean? There is choice, if you are privileged enough to enjoy it. I was not angry that this woman was a midwife, and I do not have any problem whatsoever with people's various childbirth decisions. But not everyone is OFFERED the choice, and I did not like the assumption that everyone in that room had the universe of choices available to her, when I knew that I did not. Not everyone has access to choice; just having that access is a privilege. At the time I took that class, it was difficult if not impossible for lower-income, black women in particular to get any information about breastfeeding, for example, from hospitals, lactation consultants, or anyone else. And such women's jobs were not easily conducive to the practice anyway.
The same issue about choice is true in so many situations. I told myself, when I escaped a threatened gang rape by 10 boys when I was 15 years old, that I had "chosen" not to drink, and that was why I got away (though of course, I didn't really get away, not in the clean sense of the word--a lot happened to me before my escape), and why I had to help the next girl, who was too drunk to "choose." But there was no issue of choice in that scenario. There was nothing but dumb luck, and defiant bravery, and trauma that lasted for years. My choice had been removed by others who were making a sadistic one. Those boys held the privilege and the choice, not me.
Or let's think about school. I was a "gifted" kid before that meant too much in the larger culture. I had gifted programming for one year in grade school, and was one of a handful of girls who got sent to the high school for math in 8th grade. Much of the curriculum was slow for me, I suppose. But it never even occurred to me to act out, or be bored, or challenge the teachers. My mother always told me that I had no right to boredom, no right to believe I was entitled to people catering to my desires. And so, I learned some things. I learned that other people were better than me at things. I learned to fill in time, learned to overcome my shyness by socializing with everyone, learned to place myself amongst people and figure out what I could contribute versus what they could contribute. School was not about "choice," not about discovering what I liked to learn versus what I believed to be a waste of time. It was about placing my own priorities inside a social context of everyone else's priorities. It was about learning to follow rules, and eventually, learning to break them, but only after earning the privilege of knowing I wouldn't get in too much trouble in the process.
Why am I writing about this? Well, because in the context of breast cancer treatment, patients are faced with a litany of supposed "choices." But in reality, our choices are extremely limited, especially those of us with aggressive forms of the disease for which there are few options available. What's worse, there is so much publicity of the disease that everyone is an expert who can question our "choices" and judge us on the basis of them. Here is what we know: having a healthy lifestyle can decrease the risk of contracting breast cancer. It should be noted that having a healthy lifestyle decreases the risk of contracting many diseases, if not all of them. This has nothing to do with prevention--it is simply a reduction of potential risk. No medical professional would ever profess that being healthy means you won't get cancer. Moreover, women are told they can "choose" what surgery to do, but many women make surgery decisions with little or no information to go on, and even those who make very informed decisions are judged by everyone and her mother, other breast cancer patients included. And these are just a few examples.
But there are so many choices we cannot make. We cannot go home, cannot go back. We cannot avoid our own emotions, or the lack thereof. We might "choose" a chemo regimen to some extent, but we can't choose what it does to us, we can't decide whether or not it will work. We can choose to exercise like mad, just like we did before we had cancer, we can choose to be skinny and fit and terrible at vice and cancer might come after us anyway. Those who judge, those who have advice, also have privilege. They have the privilege of health, of not being us.
We are lacking that privilege. So what is choice in this scenario? What are things we can choose?
Well, to some extent, we can choose only one thing: to be ourselves.
Some of us will be paralyzed with fear, some will be filled with optimism and vim and vigor, some will want to cry and be unable to do so. People have remarked to me that I deal with illness (and maybe other problems too) differently than other people. I just keep trucking. I just keep doing almost everything that I did before, even if it makes no sense at all. I have never thought of this as a coping mechanism, or a "choice." What choice did I have? I had 100 seizures a day when I was 6, I lost the ability to walk at age 9, I faced my mortality and the notion of bad luck and circumstance way back before I understood that other people could choose not to think about such things. My mom called me a "trooper," but I never felt like one.
I never felt that I had a choice. I never felt that health or physical ability were natural and assumed--they were privileges, and they could be taken away or lost. And that did not mean that I should be lost. Circumstance and fate were just that--they were not reflections of ME and my worth.
The extent to which I have felt fear with this recurrence is muted. As my husband told my ob-gyn today, "I think she has cried for a total of 5 minutes during this whole ordeal." And I said, I don't cry. I wish I could, but I can't do it. Gabe said I was like a rock. My doctor had just interpreted my ovarian ultrasound results as "normal," as the huge cysts I had at the time of my D&C have disappeared, though I still have one smaller cyst that is apparently of the type that exists in many healthy women. He sympathized with me when I talked about the ordeal of spending an hour to have the port and tube removed from my adjustable implant (a procedure I would have liked to have done immediately after surgery, but I wasn't allowed to, given the healing process and then chemo). Gabe sat with me through it all, though he didn't look until the end, when I had to look as well, and see the gaping hole under my arm and the blood that was just EVERYWHERE. I told the doctor I found such things to be oddly fascinating, though it hurt like a bitch today. I complained about the nearly 10 pounds I have gained on chemo. He looked me up and down, told me I looked better than ever, that he loved my hair, that I was dealing with all of this better than anyone he knew. He saw Gabe tearing up and said he was the one who needed help. Gabe laughed and said no, I have got to be strong for them! And my doctor said that I could choose to worry all the time, I could choose to try to change everything in my life to conform to what other people think will cure me, I could go online and look up all kinds of statistics, or...I could just keep doing what I was doing.
Therein lies the choice. You could be a "normal" doctor, who would never say such things to a woman. You could lord your medical knowledge over her, use the privilege of your own health to give her advice. Or you could choose to be much more human, and shake your head and say, no one should have to deal with this shit. It's hard on your whole family. You didn't deserve this. You should just keep looking forward. You are doing great. If you are a certain type of person, you would be slightly "inappropriate," and hug the woman for a long time, punch her husband in the arm, and tell him:
They don't make them like her.
And if you are the woman in question, you could shrug your shoulders and look away embarrassed, but in some secret place in your heart you can choose to actually believe him. And maybe that's enough.
Tuesday, February 4, 2014
Day 1,327: Debunking 15 Cancer Myths: World Cancer Day
Here we are again, on World Cancer Day 2014. The theme this year is "debunking cancer myths" and the aim is to educate the world population in general, and poorer countries and populations specifically, about things like the need to talk about cancer, focusing on healthy lifestyles, etc. I might touch on these themes a bit, but mostly I'm going to use this forum to debunk the kind of myths that impact my daily life. So mostly I'm talking about breast cancer, though some of this moves beyond the realm of cancer and into other subjects entirely.
1. Only unhealthy people, or old people, get cancer. Sorry, Charlie. I wish it were so. Some of us got cancer while weighing in at 117 pounds while standing 5'5", exercising multiple hours a day, and breastfeeding an infant 5 times in every 24 hours, while not drinking at all, overeating or doing anything particularly risky. Some of us continued along those lines, and we got cancer AGAIN. And taking stock of risk factors is just that--risk factors don't provide a view into prevention. For example, exercise is said to decrease your risk of breast cancer recurrence by 30% (one study has cited a 50% decrease, but 30% is used more often). So let's say you are me, diagnosed with stage 1 TNBC in 2010. After surgery with clean margins, extensive chemo and radiation, my chance of recurrence was given at 4-8%. All the exercise I did therefore lowered my risk to 2.8% to 5.6%. And I ended up in the 2.8% to 5.6% regardless. Scares you a little, doesn't it?
2. The treatment is worse than the disease. Nope. No matter how much cancer treatment sucks, especially chemo, the ravages of those beasts pale in comparison to what metastatic cancer does to your body.
3. If you are physically suffering, your life is about suffering. Also natch, nada, nope. You can suffer and be happy at the same time. You can be brought to your knees by physical ailments and resume your life as if nothing is happening. You can be bald and still look normal, you can be skinnier than you've been since high school and have people tell you YOU LOOK GREAT. You can be in the process of living and dying at the very same time.
4. Looking good during treatment makes you feel better. This might be true for some, but not for me. I looked like I looked and felt like I felt, and the two didn't necessarily intersect that much. Drawing in eyebrows doesn't make your neuropathy go away. A wig doesn't resolve your nausea or vertigo. Breast implants don't reverse the sexual dysfunction brought on by chemo-induced menopause. You get the picture. Hidden underneath this myth is the idea that if you are a cancer patient, especially a female one, you should give a shit about how you look and what others think of how you look. I mean, if men are still hitting on you, who cares if death is looming behind them?
5. People with cancer are fragile. Many people seem to believe this, and treat cancer patients with kid gloves. Some people stop talking to us entirely. But honestly? We are nothing if not tough. The toughness might be borne out of necessity, but it is there.
6. Cancer is a journey. Well, no. It's a disease. It kills people. It kills 75% of the people who contract it in the developing world and about 50% of the people who contract it in developed countries. It is not a life lesson. It is a thing that tries its best, that uses all its power, to end lives. It is not a thought process nor a meditation device. It is a disease, people, plain and simple.
7. You just need a positive attitude, and you will beat cancer. Cancer does not give two shits about your attitude. Your cellular dysfunction will not be resolved with a fist pump and a smile. In fact, many studies have shown that more ornery cancer patients have longer lifespans...because they stand up for themselves and demand things of doctors that would be denied them otherwise. I stand here today as a case in point. Also, if cancer is positive, what are puppies? What is love? If the human range of emotions doesn't allow for negativity toward a thing like cancer, there is no point in having emotions. Cancer is a huge load of bullshit and should be treated as such. The end.
8. If you don't have the "lifestyle risk factors," your cancer must be genetic. Or...not. Maybe it's just complicated. Maybe it's birth control (yep, TNBC, yep!), maybe it's pollution, maybe it just is. I swear to God I am waiting for the day when someone somewhere decides that breast cancer is caused by premarital sex, because by Golly we have to be at fault for this shit! We have to constantly ask ourselves what we have done to deserve this, instead of asking why this load of shit fell on us when we didn't deserve it at all. Such as it is for many things with women. Such as it will be, until we all do a 180 and stop blaming the victim or the patient.
9. Cancer changes you as a person, and makes you better. This could happen, I suppose. But it can also make you sad, afraid, depressed, isolated, chemical-dependent, and lacking in sympathy for other people's pettiness. The latter has happened to me. On more than one occasion I have said things like " I DID NOT SURVIVE CANCER TO TRIP OVER YOUR BIG ASS SHOES" all while threatening to throw said shoes in the trash. I do not love my family more because of cancer. I always loved them. I do not laugh or hug or screw more because of cancer. I do all those things all the time just the same as I did before I had cancer. I did not fundamentally alter my career, though I did start a new job right after a mastectomy and two rounds of chemo. I did not take a new lover, move to an exotic locale, or decide to stay at home with my kids. I just continued to live the life I had before, though I write this blog, which is different, I suppose. In all honesty, cancer didn't need to make me better. I was a pretty cool person before all of this, if I do say so myself.
10. Breast cancer is not such a bad cancer, and you get a free boob job! Um, breast cancer kills 105 women in this country every single day. This is a type of cancer for which remission doesn't exist, no matter what doctors and the media say. The best we can hope for is No Evidence of Disease (NED), and as some like me know, being NED means just that: no evidence, not no disease. I was NED for three years, and cancer was probably growing in my body the whole time. And the boob job? Please. Name me one porn star or stripper who is hanging out with no breast tissue at all--not even on the sternum (your breast tissue starts near your collarbone. They remove all of it, so you can see the bones protruding from your chest even if you get implants--at least you can if you are thin like me), with no nipple, nothing but a scar. Name me one woman who goes in for a boob job that is really ten surgeries scheduled over a calendar year. Name me one woman whose "boob job" involves removing muscle or fat tissue from another part of her body, a separate operation for which the recovery is months. Name me a woman with a "boob job" who needs to have necrotic flesh removed from her body, scooped all the way down to the pec muscle, which now sits unnaturally on top of a bag of saline. Name me one woman with a "boob job" who might be at risk of death just for having breasts in the first place.
11. All breast cancer is the same, and catching it early means you will live a long life. Sorry again, Charlie. Women with early stage disease, like mine, still have about a 1 in 3 chance of developing mets, which is incurable and will kill you eventually. For those of us unlucky enough to have triple negative breast cancer, for those of us unlucky enough to be diagnosed under 40 and even worse under 35, this disease barely resembles the disease evident in the post-menopausal, hormone-positive population. Little is known about what causes it or how to treat it. If TNBC metastasizes, women often die very quickly. This has happened to people I know. They die within months, sometimes weeks, of a mets diagnosis with TNBC. Their deaths are neither beautiful nor heroic. They are horrible.
12. You shouldn't talk about cancer, because it's personal. Clearly, I'm in violation of this one. Just because something causes others discomfort does not mean I am required to act as if it doesn't exist. I'm sorry if my life bothers you, but imagine how much it bothers ME. It's a part of me now. Deal with it.
13. Big pharma is out to get cancer patients and is doing its best to keep cancer alive. Oh, the bullshit. I have had some very egotistical doctors, even one with a straight up Jesus complex in my opinion, and none of these people wanted me to DIE. They wanted me to LIVE, if only for the chance to prove they knew how to cure me. These people were noticeably devastated by my recurrence and have begun to talk to me like I actually know what's up, because there is no conspiracy, people. I will not be better off giving $10k to some snake charmer who is going to give me coffee enemas than I am paying a total of $175 out of pocket for a $42k mastectomy.
14. Cancer is an opportunity; it might be the best thing that's ever happened to you! People who say this are clearly on drugs.
15. We are all going to die; cancer might kill you, but you could also get hit by a car and die tomorrow. OK. So. As someone who has been hit by a car, suffering extensive injuries, I am here to tell you this. If you survive an accident, you most likely SURVIVE IT. You might have lifelong problems from it, as I do, but once you are out of the woods, you are out. Cancer can come back at any time. It is like a timebomb but no one can find the trigger. Also, yes, none of us are getting out of here alive. But I have a much higher chance of not making it to 40 than you do, because I had an aggressive form of cancer twice, and the 1 in 3 chance I have of dying of this disease is much more significant and real than the potential 1 in 1,000 chance of you dying in a car accident on your way to work. Your death is an abstraction, mine is in my face. So enough of that.
There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.
1. Only unhealthy people, or old people, get cancer. Sorry, Charlie. I wish it were so. Some of us got cancer while weighing in at 117 pounds while standing 5'5", exercising multiple hours a day, and breastfeeding an infant 5 times in every 24 hours, while not drinking at all, overeating or doing anything particularly risky. Some of us continued along those lines, and we got cancer AGAIN. And taking stock of risk factors is just that--risk factors don't provide a view into prevention. For example, exercise is said to decrease your risk of breast cancer recurrence by 30% (one study has cited a 50% decrease, but 30% is used more often). So let's say you are me, diagnosed with stage 1 TNBC in 2010. After surgery with clean margins, extensive chemo and radiation, my chance of recurrence was given at 4-8%. All the exercise I did therefore lowered my risk to 2.8% to 5.6%. And I ended up in the 2.8% to 5.6% regardless. Scares you a little, doesn't it?
2. The treatment is worse than the disease. Nope. No matter how much cancer treatment sucks, especially chemo, the ravages of those beasts pale in comparison to what metastatic cancer does to your body.
3. If you are physically suffering, your life is about suffering. Also natch, nada, nope. You can suffer and be happy at the same time. You can be brought to your knees by physical ailments and resume your life as if nothing is happening. You can be bald and still look normal, you can be skinnier than you've been since high school and have people tell you YOU LOOK GREAT. You can be in the process of living and dying at the very same time.
4. Looking good during treatment makes you feel better. This might be true for some, but not for me. I looked like I looked and felt like I felt, and the two didn't necessarily intersect that much. Drawing in eyebrows doesn't make your neuropathy go away. A wig doesn't resolve your nausea or vertigo. Breast implants don't reverse the sexual dysfunction brought on by chemo-induced menopause. You get the picture. Hidden underneath this myth is the idea that if you are a cancer patient, especially a female one, you should give a shit about how you look and what others think of how you look. I mean, if men are still hitting on you, who cares if death is looming behind them?
5. People with cancer are fragile. Many people seem to believe this, and treat cancer patients with kid gloves. Some people stop talking to us entirely. But honestly? We are nothing if not tough. The toughness might be borne out of necessity, but it is there.
6. Cancer is a journey. Well, no. It's a disease. It kills people. It kills 75% of the people who contract it in the developing world and about 50% of the people who contract it in developed countries. It is not a life lesson. It is a thing that tries its best, that uses all its power, to end lives. It is not a thought process nor a meditation device. It is a disease, people, plain and simple.
7. You just need a positive attitude, and you will beat cancer. Cancer does not give two shits about your attitude. Your cellular dysfunction will not be resolved with a fist pump and a smile. In fact, many studies have shown that more ornery cancer patients have longer lifespans...because they stand up for themselves and demand things of doctors that would be denied them otherwise. I stand here today as a case in point. Also, if cancer is positive, what are puppies? What is love? If the human range of emotions doesn't allow for negativity toward a thing like cancer, there is no point in having emotions. Cancer is a huge load of bullshit and should be treated as such. The end.
8. If you don't have the "lifestyle risk factors," your cancer must be genetic. Or...not. Maybe it's just complicated. Maybe it's birth control (yep, TNBC, yep!), maybe it's pollution, maybe it just is. I swear to God I am waiting for the day when someone somewhere decides that breast cancer is caused by premarital sex, because by Golly we have to be at fault for this shit! We have to constantly ask ourselves what we have done to deserve this, instead of asking why this load of shit fell on us when we didn't deserve it at all. Such as it is for many things with women. Such as it will be, until we all do a 180 and stop blaming the victim or the patient.
9. Cancer changes you as a person, and makes you better. This could happen, I suppose. But it can also make you sad, afraid, depressed, isolated, chemical-dependent, and lacking in sympathy for other people's pettiness. The latter has happened to me. On more than one occasion I have said things like " I DID NOT SURVIVE CANCER TO TRIP OVER YOUR BIG ASS SHOES" all while threatening to throw said shoes in the trash. I do not love my family more because of cancer. I always loved them. I do not laugh or hug or screw more because of cancer. I do all those things all the time just the same as I did before I had cancer. I did not fundamentally alter my career, though I did start a new job right after a mastectomy and two rounds of chemo. I did not take a new lover, move to an exotic locale, or decide to stay at home with my kids. I just continued to live the life I had before, though I write this blog, which is different, I suppose. In all honesty, cancer didn't need to make me better. I was a pretty cool person before all of this, if I do say so myself.
10. Breast cancer is not such a bad cancer, and you get a free boob job! Um, breast cancer kills 105 women in this country every single day. This is a type of cancer for which remission doesn't exist, no matter what doctors and the media say. The best we can hope for is No Evidence of Disease (NED), and as some like me know, being NED means just that: no evidence, not no disease. I was NED for three years, and cancer was probably growing in my body the whole time. And the boob job? Please. Name me one porn star or stripper who is hanging out with no breast tissue at all--not even on the sternum (your breast tissue starts near your collarbone. They remove all of it, so you can see the bones protruding from your chest even if you get implants--at least you can if you are thin like me), with no nipple, nothing but a scar. Name me one woman who goes in for a boob job that is really ten surgeries scheduled over a calendar year. Name me one woman whose "boob job" involves removing muscle or fat tissue from another part of her body, a separate operation for which the recovery is months. Name me a woman with a "boob job" who needs to have necrotic flesh removed from her body, scooped all the way down to the pec muscle, which now sits unnaturally on top of a bag of saline. Name me one woman with a "boob job" who might be at risk of death just for having breasts in the first place.
11. All breast cancer is the same, and catching it early means you will live a long life. Sorry again, Charlie. Women with early stage disease, like mine, still have about a 1 in 3 chance of developing mets, which is incurable and will kill you eventually. For those of us unlucky enough to have triple negative breast cancer, for those of us unlucky enough to be diagnosed under 40 and even worse under 35, this disease barely resembles the disease evident in the post-menopausal, hormone-positive population. Little is known about what causes it or how to treat it. If TNBC metastasizes, women often die very quickly. This has happened to people I know. They die within months, sometimes weeks, of a mets diagnosis with TNBC. Their deaths are neither beautiful nor heroic. They are horrible.
12. You shouldn't talk about cancer, because it's personal. Clearly, I'm in violation of this one. Just because something causes others discomfort does not mean I am required to act as if it doesn't exist. I'm sorry if my life bothers you, but imagine how much it bothers ME. It's a part of me now. Deal with it.
13. Big pharma is out to get cancer patients and is doing its best to keep cancer alive. Oh, the bullshit. I have had some very egotistical doctors, even one with a straight up Jesus complex in my opinion, and none of these people wanted me to DIE. They wanted me to LIVE, if only for the chance to prove they knew how to cure me. These people were noticeably devastated by my recurrence and have begun to talk to me like I actually know what's up, because there is no conspiracy, people. I will not be better off giving $10k to some snake charmer who is going to give me coffee enemas than I am paying a total of $175 out of pocket for a $42k mastectomy.
14. Cancer is an opportunity; it might be the best thing that's ever happened to you! People who say this are clearly on drugs.
15. We are all going to die; cancer might kill you, but you could also get hit by a car and die tomorrow. OK. So. As someone who has been hit by a car, suffering extensive injuries, I am here to tell you this. If you survive an accident, you most likely SURVIVE IT. You might have lifelong problems from it, as I do, but once you are out of the woods, you are out. Cancer can come back at any time. It is like a timebomb but no one can find the trigger. Also, yes, none of us are getting out of here alive. But I have a much higher chance of not making it to 40 than you do, because I had an aggressive form of cancer twice, and the 1 in 3 chance I have of dying of this disease is much more significant and real than the potential 1 in 1,000 chance of you dying in a car accident on your way to work. Your death is an abstraction, mine is in my face. So enough of that.
There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.
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