Wednesday, January 21, 2015

Day 1,593: Graduation Day

For many young women with cancer, the constant doctor's visits are a foreign thing, experienced maybe only with pregnancy, and in that case, for an obviously much happier reason. For some women, the tests and questions are new and intrusive and overwhelming. But not for me. I'm used to constant doctor's visits, as I've had them since age 6. I used to have to go in every six weeks for major blood draws that left me weak due to my tiny size. I found the needles fascinating, the other tests such as the reflex hammer simply bizarre. I never questioned the routine of going to the hospital every month and I accepted all the procedures, including those that turned me into a virtual lab rat back in the infancy of pediatric neurology. Pregnancy brought more of the same, and then cancer meant that I would seemingly always be one of those people who lived her second life in the harsh florescent lights of the exam room.

At some point in breast cancer treatment, these visits seem cathartic. Suddenly, everyone on earth has seen and felt your breasts, and you don't even care because it's all part of the plan. Chemo infusions are a terrible ordeal, but they remind you that you are DOING something. Radiation becomes a second commute to a second job that you go to every day. You cannot go more than a few months without seeing an oncologist or a surgeon or both; they examine you, ask you questions, make it seem like you are doing well.

And then, something happens. It happens slowly but all at once. If you are someone like me who has so far (but maybe not forever) avoided a metastatic diagnosis, you "graduate" to visits every six months. By the time I had my recurrence, I had "graduated" to annual visits. In May of 2013, I had a normal mammogram followed by immediate visits with my surgeon and oncologist, and everyone told me I was fine. I celebrated being three years NED, that huge milestone that seems like a miracle for women with TNBC, and I looked forward to not going back to that hospital for an entire year.

The elation didn't last long.

Within a month, I had found a new lump. Within weeks of finding it, I would be diagnosed with cancer for a second time. And then I went back to ground zero, a new cancer patient who wasn't new at all but still needed to see a doctor all the time.

I am tired of it. I am not a woman who finds solace in these visits. I don't find comfort. On the other hand, I don't feel much anxiety anymore. I don't ever think to ask my husband to accompany me. I sleep fine the night before. My oncologist doesn't do labs or scans. He examines me: takes my vitals, feels my breasts (the real one and the fake one) and my arms for lymphedema, listens to my heart and lungs, and asks me how I'm doing. He and I both know that there is not a test in the world that could predict or prevent metastatic breast cancer for me. Why suffer through the inevitable false positives? Why put myself through the emotional heartache of waiting for test results? Why expose myself to more radiation? No, there is nothing to do but wait.

I had my 3-4 month checkup with my oncologist yesterday. It was the first time I had seen the physician's assistant since I was in the middle of chemo. She greeted me as if I was a long lost friend from high school. Her face just beamed. I remember her face when I was re-diagnosed. She was crushed; she actually had tears in her eyes. She was shocked, and I could see it. This time, she just told me I looked amazing! and it was so great to see me! All of this should be behind me now! Did I have any questions?

And the doctors of the world will never know this, but those of us who have lived our lives in and out of hospitals always have little questions in our minds that we will never ask, not out of fear, but out of some kind of misplaced pity. How can you ask for reassurance from someone who is unable to meaningfully give it? It is impossible to ask an oncologist the questions you want to ask. It doesn't mean anything. So they ask if you have questions, and you think

when will I get over this casual indifference to everything?
how long will I feel so comfortable in my self-imposed isolation?
will I ever stop wincing when speaking to the 8th grade boy next door, just because his voice has changed?
how will it feel when I'm no longer the youngest person in the waiting room in this place?
now that it seems that I'll make it to 40, what are the chances that I'll get to be old?

No, you don't ask those questions. You don't ask any questions at all, because you don't really have any. This is a crapshoot and you know it. Asking for reassurance is almost selfish at this point. Instead, you start to tell her things. You tell her about your chemo brain and how it seems to have subsided. You tell her that you've held onto the weight you gained with chemo (you gained weight? I always thought of you as super skinny! says the much skinnier PA) and you don't care anymore because you work out a lot but you're not as manic as you once were, because really, so much of that was nerves. You tell her you always had trouble sleeping, and then you had cancer, and then you REALLY had trouble sleeping, and exercise was the only thing that helped, but then your cancer came back and you were like, well, maybe it's time to sit down and eat a damn sandwich, because what's the difference? And she nodded her head like "I know that's right!" but of course she doesn't really know, but in another sense she does, because she's seen so much worse than you. You talk about your son's night terrors, which she knew nothing about, and she seems horrified for him but also for you, which is odd. It never seemed like his nightmares were a cross to bear when there were other crosses.

And that's it, isn't it? I have had enough bad things happen not to see other people's bad things, or good things, as a reflection of or conversation about me. Augie's night terrors were his own. I felt sad and sorry for him, and I also understood him all too well. I did not think it was something I could not handle because I had other things to handle. It wasn't for me to handle, because there was nothing I nor anyone else could do. Augie had to get through that himself. All I could do was be there and love him. I could not experience that terror for him and I could not take it away from him. I knew therapy would probably not help him, though we did it anyway. The only thing that helped was me finishing chemo. I told the PA that, and she looked at me thoughtfully.

I realized it must be hard to hear that things just must be borne out when you are in a profession focused on fixing problems.

Our visit was nice, friendly, even enjoyable. She asked me if I wanted to see the doctor, and I realized that was my choice now. I didn't need to see him. I figured I was there, so why not? And then she told me I didn't need to come back for six months. It's been almost two years! If I didn't want to come back in the week after my annual mammogram (I always try to schedule mammograms on the same day as surgeon and oncologist visits, to minimize the number of days I need to make the trek to the hospital), I didn't have to do that.


I was still thinking about that when the doctor came in. When I made the mammogram appointment--a year in advance, because even when you've had breast cancer twice, the top research hospitals in the country are still too booked to deal with you--I didn't even think about the fact that my oncologist wasn't in clinic on Thursdays. By the time it occurred to me to worry about it, maybe a month ago, there was nothing to be done. I could not get the appointments on the same day. I found this annoying, but not alarming. It didn't concern me to go to my mammogram and then just go home. That in and of itself is amazing.

But now I know things that I didn't know before. I know that tests and visits might give the illusion of solace but they don't give the promise of cure. I know that I am just as, if not more, likely to find my disease myself, as I have done twice now. I know there isn't much left for anyone to do for me.

I asked the doctor if it mattered about the post-mammogram appointment. I told him that since my surgeon had moved out of state, I didn't have one to see. He said there was nothing for them to do anyway--as long as I was seeing someone, that should be enough. He said it didn't matter if I saw a doctor after the mammogram, because...and then he said nothing. So I helped him out:

I know, I've done this twice now. If they saw something on the mammogram, I wouldn't be leaving this place. They would find you or someone else, no matter what, no matter who was on duty.

They would send you right down the hall.

I know. I would go straight to the (biopsy) table.

We had a small silence.

He filled it with a version of the thing he always says to me, which is "you look great!"

This time he got more specific: "Your hair looks great!" Then he said "You had long hair before, didn't you? Your hair was long even before we started all of this." WE, doc? That's so cute.

Um, yeah, it was, I said, amazed that he remembered that, except that of course, back then, every single person in the cancer center marveled at my long curly red hair and treated me like I was about to experience a death in the family and it was my hair, not me, that they mourned. So I said, yeah, I had long hair, but I don't ever want to have it again. And he said this:

"You'll have more time to focus on other things now. This is the new you. You look great!"

Other things were said; he joked with me, which I still find remarkable. We're like a couple of old people who have forgotten what we used to fight about because it doesn't matter anymore.

I realized when I left--I walked the roughly two miles between my office and the hospital both there and back--that I had left them feeling more reassured (she looks great! she's doing well!) than they had left me. I made them laugh. I spared them the tough questions. I asked the oncologist about what I should do and whether I should worry about the kind of chemo I did almost out of deference to him, as opposed to real concern. He told me to eat well and exercise but not to think about it too much, that there was nothing special I should do, there was no evidence saying I should have done anything differently, and happy new year and we will see you in the summer.

As I was walking briskly through the picturesque skyline that is simply better than maybe any other skyline anywhere, I thought about something I had said during a book club meeting recently. Now that my chemo brain seems to have left the building, I can hardly stop myself from reading. I didn't realize how much I missed being able to get through a book. Regardless, while discussing a book at my house, a woman was telling a story about a momentary fear she had of a bomb scare when she was in Europe with some students. She said, of course it was fine. What are the odds you are going to be someplace where something like that happens?

And I said, well, the odds that it would happen to you are the same as the odds of it happening to someone else. The freakish things that happen might as well happen to you.

People laughed, and I realized it must sound like such a strange thing to say. It must seem paranoid, desperate even.

But that is what I have been saying for all of these long years--there is nothing sad, or depressing, or fatalistic about recognizing that the crises of fate that happen every day to someone else also happen to us, right now. It is the absurdity and the randomness, the seeming unfairness, that can bring us all together, allow us to feel some real empathy. If you recognize how close you are to being on a train car where a bomb might go off, you will begin to see trains differently. And that is not to say that you will stop going places, or drive a car instead. It means that it will seem remarkable how many trains there are without bombs, and it will seem beautiful to imagine all the places you can go.

We can't protect each other or ourselves from life happening in ways we wish it wouldn't happen. We can't ask others to tell us it will be all right when there is no way for them to know that. We can't feel burdened by other people's terror or jealous of other people's joy. What can we do?

When the social worker pulled me aside after my appointment and thanked me for filling in the survey about my energy and anxiety and moods, she said they wanted to help, they wanted to know how to provide services, to help me through everything. We talked for a bit, but what could I say?

"I'm good, actually. I've done this before, twice now, I've been doing this for years. I think I've got it figured out."

We are here to help you, she said.

"I know that. I know you are. Thank you for that."

People are there who would like to help. Some things can be fixed, and some things can't be fixed. But the fact that someone would like to fix it, the fact that someone who has seen countless people die of my disease can see my missing gorgeous hair as nothing more than extra time for me to spend on my precious life, the fact that my friends are happy to see me "graduate," the fact that my husband responds to my text telling him about the six month milestone with nothing more than "I love you," that's it. The world is filled with people who couldn't care less about me or anyone else, and somehow, in the randomness of fate, I stumbled across some people who cared.

What are the odds?

Friday, January 9, 2015

Day 1,581: The Drugs Don't Work? One Year Post-Chemo...Again

One year ago today, I finished my six month round of chemo. It was the second time that I did chemo for the last time. The chemo I chose was an "old school" model; it seemed more innocuous, in that it didn't throw me into menopause, I could eat, and I didn't lose all my hair. But over the long course of six months I had a variety of side effects and issues, both large and small. Part of the thing about chemo is that all the outside world considers about it is the POISON aspect. They think about how it kills your immunity and your hair follicles. Well, not all chemo does that, or at least not to the same extent. My blood counts stayed excellent throughout chemo last year--until the massive hormone changes brought on by the drugs (something almost 100% of women and girls experience from chemo, though it isn't talked about as much) made me bleed so heavily and for so long I became anemic. I had terrible vertigo while on chemo; I hardly realized how I walked, and even drove (I shouldn't have been driving, probably, at least not towards the end) in a state of constant crookedness. I was often in a near-faint. My hair thinned. I had terrible fatigue; something I hadn't really experienced the first time around. The AC chemo brought me to my knees, to be sure, but this MF chemo was a sly one--I would feel ok and then my body would just give out, I would feel as if I could not move. I had chemo brain, and truth be told, I still have it. I am oddly ashamed of that fact. It has gotten better, but for more than a year I couldn't concentrate enough to read a book straight through. I wrote lists of things, including people's names. I couldn't remember anything. And please don't tell me I'm just getting older, or that I'm a mom, or any of that. Those things are true. But on top of that--on top of all that--I was going through six months of chemo, and it caused chemo brain, which is a terrible name for a very real problem.

This is all to say that chemo is awful.

And I did it again, and I would do it again, if I have to, which I really, really, hope I won't.

I say this knowing it might not have worked for me either time. My oncologist was honest with me about that when he told me the second time that he understood if I didn't want to do chemo again. He said, there's a high probability it won't work for you, because there's a high probability you won't need it. But there's nothing else for you, so if I were you, I would do it. We could give you different chemo. I asked about platinum-based chemo, saying I didn't want to do that, and he said that for someone like me, TNBC, but not BRCA positive, no evidence of a DNA-repair-resistant disease, very early stage, with all the cancer successfully removed, there was no evidence that would help me above anything else. We sat there looking at each other, contemplating the absurd crap shoot. I railed against the idea in my mind. I said I still didn't want a port, even with six months of infusions. I said I didn't want to take side effect meds (and I didn't--none at all for six months; they gave me half a dose of Zofran through my IV before each infusion to make sure I wouldn't vomit up the drugs, and I relied on acupuncture to help with all the other side effects).

And then I danced that dance again, and started chemo two weeks before I started a brand new job based in another state. I did the second round of chemo with my family. I say that because we went through it as a family, and almost as a family alone. Friends and others had a hard time knowing what to make of a person doing chemo AGAIN. Wasn't I supposed to be done? Didn't I beat that already? It couldn't be that bad, right?

Of course, it was bad. In some ways, having to do chemo again was more devastating for me than having my breast amputated--in fact, it was more devastating without a doubt. But here's the thing. We have created this weird cult of personality for chemo. We talk about chemo, and oncologists, and cancer treatment, in a way that we don't talk about any other health issue or disease. We've created a cancer conspiracy, where chemo really kills you, and oncologists want you to suffer and die, and the poison will take everything good from your life.

And yet...look at me now. Look at me for almost the last five years. You can go through hell and come back. Some people go through hell for their entire lives. Many people with epilepsy do this. Anti-convulsants are just as poisonous in many ways as chemo. What is chemo? Chemotherapy just means chemical therapy. Most chemos, though not all, are derived from plants. They are no more unnatural than anything. Hell, there are berries and mushrooms in the pristine wild that will stop your heart in an instant. You can go on and on about the health benefits of pot, and you're welcome to, but you might get some with some bad chemicals put into it by some shady dude and be screwed. There are "natural" supplements that cause heart disease. My liver was poisoned by Depakote (a drug that caused high levels of toxicity in my body and that I would hate to take ever again, but that other people take gladly for depression, not just seizures) years before it was poisoned by Methotextrate. When I was 26, I had my gallbladder removed, and they showed me a picture taken with the laproscopic camera of a liver that belonged to a 65 year old alcoholic, not a 26 year old who was straight-edge for almost all of college and then some.

When I went in for chemo, I refused the drugs other patients asked for more of: Benadryl, Zofran, Ativan. If chemo brought me to my knees, those easily-accessed, common drugs made me feel like I had no knees at all.

So it was hard. And yet here I am one year later, one year after "finishing" chemo...again: active, healthy weight, fertile, still relatively brainy, kinda cute hairstyle, the only adult I know who hasn't gotten a cold or flu this winter. My immune system is kicking ass and they gave me a raise and a bonus at my job and my kids are a year older and my husband still loves me and my friends still tolerate my eccentricities. You do it, and it ends. Or even if it doesn't, you do it. Because what else is there to do?

This leads me to what will be a short discussion of this very disturbing story about the 17 year old girl with Hodgkin's lymphoma who is being forced by the government to do chemo. This story is unbelievable to me on many levels. The first is that agents of the government believe they have the right to force drugs into someone's body. She is a minor, I suppose--but barely. How is it possible that they can force her to have a port? I didn't agree to that, and I refused to be treated at a hospital that would have made me have one placed. Port surgery is real surgery. Can the government enforce surgery? The port itself is not life saving. The side effect meds are not life saving--are they going to force her to do those too? Where does it end? Could someone have done that to me? Could they have said, but we think it's better for you to weigh 118 pounds and never sleep at all for a week at a time than to be nauseous, 110 pounds, and sleep at night? Because I would beg to differ.

Who gets to decide? The answer is obvious: she should. And please don't start in on things like measles, or ebola, or leprosy or smallpox, and the government making demands about vaccines, medication and quarantines. No one can catch cancer. No one else has their life put in danger because I, or someone else, has cancer. You and you alone suffer through this disease. The same is true for all non-communicable diseases.

She should have the choice. But the second thing I don't understand is why she would make that choice. Her cancer is incredibly survivable with chemo and incredibly deadly without it. To believe otherwise is to believe in the conspiracy. Where did that idea come from, who started the story about the cure being worse than the disease? Have you ever seen someone die from metastatic cancer? It is a horrible death, natural or no--people rarely go out without extensive suffering. Cancer is not a heart attack. And in this case, hers is not a gray area like mine, where no targeted treatments have been developed. I did chemo knowing it might not work, that the chances were high that it might not, but also knowing that there was no Herceptin or Tamoxifin or anything else for me. Women with all kinds of breast cancer do chemo knowing that if their cancer metastasizes, they will have terminal cancer. Not all cancers are that way. If I had been told that I had an 85% chance of being cured with chemo and an equal chance of not living to 20 without it, I would have probably put the needle in my arm myself. Those kinds of chances are a gift straight from science. It's a modern miracle. It's the legacy behind a woman I see at my local pool who has raised three boys and is almost 30 years out of the same kind of cancer this young woman has. Her biggest medical complaint these days is (natural) menopause. If I hadn't shown up bald at the pool, I never would have known she had cancer in her early 20s, had gone through extensive radiation and chemo, had a recurrence, and survived. It's not like you can TELL.

But it isn't for me to say.

What is for me to say is that chemo is chemo, it is an attempt to eradicate a disease that is not well understood today but it much better understood than at any point in history. Chemo is very hard on the body, but the body can be very hard on itself. Drugs were hard on my little body as a child as well, but they led me from a place where I had 100 seizures a day and inevitable brain damage and cognitive delay to a place where I had zero seizures a day, a normal childhood, and a chance for an intellectual career.

Sometimes it's true that the drugs don't work, they just make you worse. And sometimes, that's just a song to sing when you're feeling hopeless. I am so grateful to not be in the middle of chemo right now. I am so glad to have made it a year past treatment. And yet, there is a part of me that is afraid of this one year mark, because if my cancer is bound to come back, it will probably be in the next few years, and I will be that much closer to the potential end of my life, which seems more unbelievable than any other thing.

How could this person be sick? How could this person be dying? What a world.

It's better to live in it and be of it than to turn away from it in fear of what it might do to you.

This is just to say. A year later, and I'm still trying to walk away, still exhibiting too much attitude, still writing this, still here.