Saturday, April 26, 2014

Day 1,412: Race to the Finish

For a culture so obsessed with immediate gratification and the concept of winning at any cost, it is interesting how we are simultaneously inundated with inspirational messages that tell us to keep the bigger picture in mind, to concentrate on the end goal, the long term horizon. These messages might originate in war or be developed with sport in mind. However, they are nonetheless used to describe the process of illness as well, or, indeed, any kind of great suffering, as if thinking about determination, moxie, gumption, and that fighting spirit could help us, somehow, cheat death. I've been thinking about these messages, and how they are used in a cancer context, and I'm thinking about them for a reason other than what you might think. They are swimming in my head today:

It's about the journey, not the destination.
Focus on the war, not the battle.
This is a marathon, not a sprint.
Short-term suffering, long-term life.

I understand the sentiments behind these words--really, I do. And yet, they make me feel inadequate. Because for more than 30 years, maybe for the entirety of my life, I have trained myself to play a different game.

I am a sprinter, not a marathoner. I might be a warrior, but I am no general. My whole life has been made up of one destination after another, and while the journey has been interesting, experiencing it was never my intent.I was always just trying to get through the day, the week, the month, the year, the stage in life. Always.

I have figured something out about myself after this second bout of cancer, this fifth round of trying to cheat death, and this something is the subject for another post, or maybe many of them. I need therapy. I figured that out when I saw this on the Mayo Clinic website, an article about PTSD and cancer survivors. It lists the symptoms commonly experienced by cancer survivors who have PTSD:

Problems sleeping because of intrusive dreams or flashbacks of trauma
Feeling hopeless
Memory problems
Trouble concentrating
Avoiding activities you once enjoyed
Feelings of guilt or shame
Irritability and anger
Self-destructive behaviors, such as drinking too much or taking unusual risks
Uncontrolled sadness and crying spells
Hearing or seeing things that are not there

I read this and thought, huh. With the exception of the first and the last one (I think I'd have to sleep more to have intrusive dreams), I have...all of these. Now, I have them Katy-style: My uncontrollable crying spells last about 30 seconds, I feel sorry about how my life has affected other people but I feel no guilt or shame, and while I think I've been drinking too much, because I have a drink almost every day when I never did that before, even in college (hell, I was basically straight-edge the last three years of college), I doubt that qualifies as excessive risk-taking. The sadness, hopelessness, general detachment, extreme trouble concentrating on ANYTHING, my inability to remember something as simple as our weekend plans, my short temper, my desire to be alone even after an entire day of being alone, my lack of interest in doing so many things--including this--all of these things I was attributing to chemo brain. And maybe that is a part of it. But it was when I realized that I didn't even feel like WRITING anymore, when I realized that I'd rather sit in a room by myself and do something completely mindless like sing along to the radio or read Harry Potter than talk to people, have sex, play with my kids...well, then I started to think it might be time to talk to someone.

So I'll get on that at some point. But that is not why I am writing today.

Seeing the PTSD list made me think about a lot of things. It made me think about how I have not really felt that way before--yes I had a depression my senior year of high school, and I felt like I was jumping out of my skin all the time and everyone seemed ridiculous and I ditched school constantly and felt so restless I could barely stand it. Yes I have had some depression, hormone related and not, from cancer. Yes, when I was 9 years old, I had night terrors for months after I almost died in a terrible car accident. Yes, I had panic attacks for years if I was the only girl in a room after I was abused and threatened with gang rape when I was 15 years old. But in general? I just kept doing everything normally, all the time, all my life. After the car accident, I wrote in my diary every night at the same time from the same chair starting with the same phrase. After that assault I went to school where I had to see and interact with the perpetrators every single day. After I felt that gun at my temple at age 25 on the green line, I got right back on the same train less than 36 hours later. I have never stopped working, not with pregnancy or cancer or anything else. I have continued to raise my children and work out incessantly and write and do things, even when I have stared death in the face not once, not twice, not three times...well, you get the picture. People often ask me how I can do what I do, and I have never known what those questions really mean or what I am supposed to say.

OK, that is not entirely true. I know what the answer is, but it is not what people want to hear.

I can do these things because I am a work horse. I was always the shooter when I played ball. As long as there was a number I could count to, I didn't need to stop jumping rope. I never worried about winning the game because what I cared about was making the shot, catching the ball, throwing the spiral, setting up that perfect block.

I am a sprinter. I am a sprinter even though one of the times when I cheated death left me with injuries that would ensure I would never truly be able to run again. I am still a sprinter though--by training.

For as long as I can remember, I have carved my life into a series of goals, no matter how short or long. In the easier years, like college, I had longer term destinations: I wanted to be 21 years old and graduate from college never having been married or pregnant. I don't know why that was important to me, though I suppose the answer is that achieving that seemed like a long shot in my situation. I thought I was pregnant a few weeks before I graduated college, but it turned out to be some mysterious illness, so I achieved this goal that I had had for, oh I don't know, EVER, and then, I thought...

So what the hell do I do now?

There was always something to get through, some goal, some ending to look forward to, to strive for: the day when my legs would work again, the end of the suffering that was happening now, the moment when I got away, the end of treatment, the cancerversary, the wedding, the children's births, living to see my son get to kindergarten (that one hasn't happened yet--so, humor me--knock on wood), a house to renovate, a new job, hell, a new haircut.

And now, I am still sprinting, but they are micro-sprints. There is no 26th mile. There is no 5 k. There is the house three doors down that my mother let me run to as a child, and I know that when I reach it, I have to just turn around and run back. That is what I am doing right now--running back and forth between what is happening this moment and what will happen in the next few hours. There is nothing beyond that. There is race after race, but they are suicide sprints.

I know that many of those who read this will think I am in trouble, that I am losing it. I don't see it that way. I don't think I need fixing, but rather...tinkering.

At the gym where I spin, there is an instructor who encourages us not to think about the ride as 10 or so separate short rides coinciding with the songs, but as one long ride. And I understand what she is saying.

But I have been waiting for the end of one song to lead to the start of another for my entire life. It is what I have trained myself to do. I am not prepared to see this as a weakness, or a lesser choice. I am not willing to concede that this means I am damaged. I don't think I am broken or that I need to learn how to be a different person, because being this way is an enormous part of who I am. There is no KatyDid if you take away the sprint. I am not the kind of person who believes that everyone has to run marathons, or make battle plans, or focus on the afterlife. I do not even believe that being at peace should be the goal. There is nothing wrong with fighting, no matter how tiring it is. Sometimes, you do things because you are good at them, and maybe one of those things is using your body, being aware of its every movement, as a way to stave off the constant thoughts in your mind. You move so that you do not have to think. You keep busy so that you don't have time to grieve.

Until now, I think that I have trained adequately. Until now, I allowed myself the momentary depression or sadness or fear that made it possible to just suck it up and move on to the next mile. Even now, in this detached and numb state I find myself in, I do not think I need to start my training over.

I am still a sprinter. It's just that right now, I'm a little bit...winded.

Monday, April 21, 2014

Day 1,407: The Fighter

I've never liked how people with cancer are called "fighters." It's not fun, nor enviable, to fight yourself, to be at war with your own cell biology. The battle metaphors quickly wear thin, especially for breast cancer, as they seem somehow patriarchal, even somehow misogynistic; our bodies are just never RIGHT, are they? It's all just somewhat...violent to me, this slash, cut, burn, poison, kill. It's tiring to be a badass all the time. We didn't enlist; we were drafted. We were put in a sink or swim situation and then told to act as if we entered the race on purpose to prove to all the healthy people that our breaststroke is, indeed, superior.

So, I don't like this notion of being a fighter.

And yet, if I am not a fighter, who am I?

And what do I do now?

For as long as I can remember, I have been fighting something. I've fought my body for over 30 years. I don't mean I have had body image issues, or any other normal woman body things, though I have had those too. I have fought to stay alive, to continue to function "normally," to keep my place in the world. I have cheated death five times. My body, and my brain, has just stopped working on so many occasions. I have lost the normal function of almost every part of this corporeal self--my legs, brain, liver, lungs, chest muscles, you name it. There has always been something to "manage" or "overcome" about my body. And that type of fight can be so consuming; even while I have managed to continue to do the normal things of life, it is always there, this fight. The weather of my body is just so CHICAGO--I am aware of it all the time, and it can change on a dime. There is no taking health or physical ability for granted. There never has been.

The fight has bled into other areas of my life--maybe into all of them. I have always been stubborn, and willful. More than one man has tired of the relentlessness of my fighting style. I chose a career that kept me fighting, and in a big way: I fought some of the largest financial institutions in the world, before it became fashionable to do so, when I was not even 25 years old. Headhunters from some of these firms wanted me on their team, because I fought them so successfully, with my research, letters, Congressional testimony, activism, and on and on, that they thought it might be easier to work with me than against me.

I spent my teenage years fighting off men, and boys. I fought them literally with my fists and feet and figuratively with my suspicion and overdeveloped instinct for self preservation.

I fought to make this career for myself out of thin air, it seems, as I somehow became a business economist for the central bank after econ class in grad school.

I fought to build a semblance of a functional marriage and family out of the seeming ashes of the circumstances that my husband and I hailed from, and during the few times when it seemed destined for failure I was prepared to fight to do it all on my own.

And while I never felt like I was fighting with cancer, I suppose I was. I fought with my oncologist, I fought people's perceptions of me, I fought to keep my job and said to hell with it about my hair and then I fought to pick up the pieces and start again, even buying and renovating a new house in the process. And then--it came back, and I am back to where I was three years ago, being asked to start over, to start the clock again, being asked to admit that NED doesn't mean a damn thing in this house, there is no remission, there is only waiting, and resignation, and the realization that I might not have that much fight left in me. I have been taken out of the skirmish or the battle or whatever you want to call it, and I don't know how to live in the world where I am not fighting something, where my family life is stable and happy and my job calls for coalition-building and the day to day things loom large in my consciousness and it all seems so...pedestrian.

I am adrift. I am doing all the things I am supposed to do, and I am even doing some of them well. But my heart isn't in it. I can talk to people as easily as ever, but I am left feeling somewhat isolated even as the conversation flows. I think about life and death while other people think about cooking dinner and it leaves me wanting nothing more than to think about cooking dinner, or hell, it leaves me wanting nothing more than to just EAT dinner, as the physical takes on infinitely more importance than anything else. At the end of the day all I want to do is...NOTHING. It is hard to think about the long term future when you aren't at all sure you will have one, and when you live with that uncertainty, the short term future just seems kind of irrelevant. And so, the only thing that matters is that which is happening NOW, or a few minutes from now. The things that have happened in the past are relevant, in that they shed some light on the big issues that threaten to take over all your thoughts. Every single action can be compared to the symbolism experienced when you stood inside the footprint of an animal that has long been extinct and once walked a much different earth 115 million years ago. Everything seems relative, impermanent, absurd. The world is full of bombs waiting to go off and enemies at the gate.

And so again I ask, who am I if I am not a fighter? And really, what am I supposed to do now?

Sunday, April 13, 2014

Day 1,399: False Dichotomies

I think this is the longest I've ever gone without writing in KatyDidCancer. I just haven't had any motivation to say anything; I've been feeling more and more like I just can't THINK about things. I'm starting to wonder if maybe I do have some kind of chemobrain, or if things have finally caught up to me and now that I am "done" with treatment (again) it's beginning to dawn on me how different I am in some respects. I get so much done, and yet...I can't plan. I can't worry. I can't...THINK.

So who the hell am I?

Well, I guess I'm the one who eventually comes back here, to pontificate on something that's been tugging at whatever's left of my brain. Recently a woman who is a member of a facebook group I belong to for TNBC survivors said she had overheard a few women talking about cancer and saying that they would never do chemo if they had cancer because Suzanne Sommers didn't do it and she was fine (or something like that). We cancer patients, especially we breast cancer patients, get to hear this kind of stuff all the time. There is a trend in our society to put forth dichotomies between science and faith, natural remedies and supposedly unnatural remedies, lifestyle and luck, environment and genetics, profit and altruism.

When it comes to something like cancer, all of these dichotomies are essentially false.

I am not a religious person, but I have never understood the dichotomy that some people believe exists between science and faith. I think I am the ONLY non-religious breast cancer survivor I know. Of course people lean on faith to help them through cancer. They use science too. No one ever said you couldn't pray your way through chemo.

And people use "natural" remedies as well in the form of vitamins, supplements, acupuncture, and other "non-Western" strategies. Often, they do this along with surgery, radiation, and chemo. In fact, every cancer center I have worked with has offered wellness initiatives (yoga, group therapy, meditation) as well as access to free "alternative" services such as acupuncture, reiki, and massage. I've never met an oncologist who would tell you NOT to do these things if they help you. In fact, I relied on acupuncture in lieu of pretty much all of the side effect meds I was offered during my first round of treatment. They didn't even bother to offer me meds the second time, as my side effects to the side effect meds were worse than the problems they were intended to solve. I was encouraged to try other things BY MY MEDICAL TEAM at a major research hospital. Furthermore, I always find it frustrating when people say that medicines, especially things like chemo, are "unnatural" but alternative remedies (usually those that are not approved by the FDA, for example) are "natural." What is "natural" about a coffee enema? There might not be much difference in the "natural" remedies people take compared to even extreme forms of medicine, like taxane-based chemos. Do you know what Taxol is? It comes from yew tree bark. That is pretty "natural" I would say. And if you ate it in the wild, without it being treated for human consumption first? You would die. There are those who are putting forth remedies that have not been tested for safety that might be just as harmful, even if they SOUND safer.

And there is no oncologist out there who is going to tell you NOT to exercise or eat healthy. But it is nice when you have been working your little ass off to do those things and your cancer comes back anyway and they don't BLAME you for it, because they understand the role that luck plays in something as elusive as cancer.

There are those who look for problems in the environment as a way to explain cancer, especially for those of us who are supposedly not "genetically inclined" towards cancer. Of course, the number of potential genetic mutations that could explain cancer is probably almost limitless, and right now we have a grand total of one clue--BRCA--into what causes a small fraction of breast cancers. So it's entirely possible that my cancer COULD be explained genetically, if we knew more about genes. Is pollution a problem? Hormones in the milk? Hormones that we are pumping into our bodies every day to stop us from getting pregnant (oh wait, sorry, I've broken the cardinal rule of breast cancer by bringing that up)? Well...sure. But the reality is that we all live in the same society, and most of us live in large urban areas where there are issues like pollution, lead paint, toxins that get in the water, and the like...and some people get cancer while others don't.

And finally, the idea that Big Pharma is out to get people like me while all the altruistic healers are being held down by the man is something that grates on my last nerve. There's always some dude who never went to medical school and has never directly treated a cancer patient who will write a book and gain a bunch of followers for his "cure" for cancer. And you know what? That dude doesn't give away his books. His "treatments" cost money, and he usually requires that you buy them directly from him. His "spa" and "camp" offers might set you back upwards of $10k or more. That dude isn't offering you jack shit for free. And if you die or your cancer comes back, he will often cook his books and change up his statistics so that your poor outcome is hidden from the public...because no one is regulating him. Now, do I think that pharmaceutical companies are altruistic? No, I don't. I think there's big money involved. Do I think there are issues related to doctors working too closely with these companies? Probably. But I also know this. My oncologist makes the big bucks whether or not I take chemo, whether or not I go to an acupuncturist, whether or not I take side effect meds. He is the one who said to me, during my visit when I needed to decide what to do about chemo for my recurrence, that he wasn't going to tell me that more chemo was better, because that wasn't true. He wasn't going to tell me I would have a poor prognosis if I didn't do chemo, because he didn't think that was true either. He recommended chemo for me because there isn't a single other thing that has proven effective for my disease. Not. One. Thing. And I'd love to know how I am being milked for all I'm worth due to my reliance on a large traditional research hospital. I have decent health insurance. After all has been said and done, I have probably paid less than $2,000 for all of my cancer-related expenses, and that includes $800 spent on the non-standard BRCA test I did in 2010, which wasn't covered by insurance. I have spent more on acupuncture than medication.

So there are some of my gripes with these false dichotomies. Now let me get to what I actually wanted to say.

I think about those women, and people like them, quite a bit. The women who make the choice they could not possibly make without being in that situation, the people who judge others' circumstance without even slipping their pinky toe inside the other's shoe. I find such people tiring, and not really worth the effort of explanation. What I DO find important and worth discussing, however, is this:

What are these people so afraid of?

I would never do chemo, they say. NEVER.

Huh. Why not? I had some of the worst side effects to chemotherapy that my doctors and fellow cancer patients had ever heard of, I hated it with every ounce of my being, it kind of brought me to my knees.

And then?

I went and did that shit again.

I chose a different poison, but it was poison all the same.

I did that knowing I could do it. The body is resilient. I wasn't afraid of being bald, or fatigued, or nauseous. I was afraid of unknown effects, I was dreading the potential for neuropathy and menopause and all of that, but you know...I had been there. I have clear memories of my little bald self weighing in at 111 pounds and weak and tired and having incessant hot flashes, wearing no makeup (do I get to take credit for that no makeup selfie for breast cancer awareness trend?) not having slept in an entire week and yelling my head off at my oncologist because at the moment I hated him with the fury of a thousand suns with his casual dismissal of my problems. And I remember my hatred just growing as he looked at me in that slightly patronizing manner and said I was fine. Because I didn't feel fine. I was suffering.

And now I can see myself as he saw me.

He knew I was suffering. He knew it was hard.

He knew I could do it.

He saw me there, pissed off, spouting off research at him, yelling, and he saw vim and vigor where I saw nothing but absurdity in myself. He saw youth where I saw age. He saw someone who still had the energy and sense of herself to fight him. And most importantly, he saw someone who had a terrible and aggressive disease, a disease that was a hell of a lot more likely to kill her than chemo.

And I know something now that I guess I have always known. I know that suffering is a part of life, and it is one you can manage. I know that life can include excruciating pain, both emotional and physical, but that pain ends, or at least it fades. I know that disfigurement and disability are preferable to death. I know there is no heroism in the fear of suffering, no martyrdom offered to the afflicted.

Sometimes medicine makes you suffer. Sometimes it's worth it, and sometimes it's not. I know it was worth it to take that liver-killing anti-convulsant medication from age 6-17. Having 100 seizures every single day would have done a whole lot more damage than the admittedly toxic medication. I went from having 100 seizures a day to seizures a day.

The thing about medication (hello polio and small pox vaccines! thank you for eradicating those diseases off of the face of the earth!) is that sometimes?

They work.

They don't always work. Chemo doesn't always work; its effects might work immediately to eradicate cancer only for the patient to develop mets years later anyway. About a third of people with epilepsy don't respond to medication. Unfortunately, the vast majority of those people don't respond to dietary changes or other remedies either. That is one of the reasons that epilepsy can be so deadly. There are roughly the same numbers of Americans living with epilepsy as with breast cancer--about 2.8 million. While about 40,000 women (and men) are estimated to die from breast cancer every year, the number is 50,000 for epilepsy. Some of those deaths will occur in children, a fate that at least so far is spared those with breast cancer.

I guess I am writing this just to say that I believe that there are forces in our society that have worked to attempt to counter the tragic effects of some terrifying conditions and diseases. They have not always been successful, nor completely altruistic in nature. But I also do not believe that their intentions have been to destroy people like me. And in spite of all that's happened, there is still a part of me that hopes this:

Maybe, just maybe, this worked.

That's what we have--science and faith and hope, technology and art, progress and the knowledge that some things never change. All we have is this human striving for immortality, the one thing we collectively know is impossible to achieve. And because we know that desire is futile, we try to do something that isn't. It's in that space where we live our best lives.

Or, at least, someone sold me that line--and I bought it, hook, line, and sinker.