other people’s problems

Getting diagnosed with a chronic form of cancer at age 25 has left me ill-equipped to deal with anyone else’s medical issues now, at age 26. It has taken time for me to remember that me getting dealt a bad hand doesn’t mean that my family and friends are now immune to hardships or medical problems of their own. When I was newly diagnosed and recovering from surgery, I tried to shut out all the problems around me. But now that i’m feeling good–great, even –more often than not, I have been slowly trying to emerge and let the other problems in a little. They’re part of life. And my support system isn’t just there to support me–i’m supposed to be there to support them too.

I am. It is just awkward and new for me to be on the other side of the conversation. My good friend told me the other day that she’s getting checked out for some of the same symptoms that I had before I was diagnosed. In all likelihood, she doesn’t have cancer. But she might have something–and I don’t want her to have anything. Can’t I just have cancer and deal with it well emotionally for both of us, to save her the trouble of dealing with anything else? Now that I’m already sick, I don’t mind being a martyr.

It doesn’t work like that–remember?. Even though I know her doctors aren’t thinking cancer, there were just so many memories running through my head when she was talking about heartburn, a visit to a GI specialist, high liver-function tests, and an endoscopy, that I couldn’t keep myself from saying something. Well, a lot of things. About diet and about endoscopies and about liver-function tests and about blood tests and stool samples. I probably said too much. But all I have is my own experience. My own experience says: young people can get diagnosed with chronic conditions. I’m probably cavalier about chronic conditions, but especially about cancer. Just because i’m in a good place with cancer right now doesn’t mean that A) Things can’t change quickly and, more importantly, B) The word “cancer” or the idea of being “sick” forever isn’t really freaking scary for someone else.

So instead of freaking people out all the time (except maybe my friend–I hope I didn’t freak her out), I just walk around all day diagnosing people with cancer in my head. I would make a terrible doctor because anyone who came to see me complaining of heartburn or nausea or vomiting or diarrhea (my symptoms), would probably get sent directly to radiology for expensive imaging and other tests. How could they not have cancer? The truth is, these GI symptoms could be almost anything. But now that i’ve seen the zebra, it’s hard to see the horses.

My perspective on medical problems, or even just simple colds and flus, is forever skewed. If someone isn’t feeling well, I say the requisite pleasantries like, “Get better soon,” and then I think about what a luxury getting better is. Imagine getting better being that simple. Throwing up sucks all the time, but throwing up everyday for 5 months…

It seems my bar for things being a big deal–for “being sick”–has been set higher. I will soon start the liver transplant evaluation process. I throw the idea of a liver transplant around, but it’s a big deal. I had a really big surgery. I’m on hardcore drugs that screw with my immune system and my ability to process alcohol and any number of other things. Nothing else really registers. I know, everything is a big deal for the person it’s happening to…but I can’t relate anymore to most of the small things my peers complain about. Maybe i’m even guilty of complaining about comparatively small things–like the stupid shot I get once per month. Nevertheless, I try to be sensitive by taking myself out of the equation. It doesn’t always work.

Even as I say all this, it’s terrifying, but true, that 1 in 2 men and 1 in 3 women will get diagnosed with cancer in their lifetime (a startling statistic from Emperor of All Maladies). That’s a lot of people. I have a lot more than 5 people I love who could fall into that statistic range. Sorry–why aren’t I already sick enough for all of us?

so which plan are you going with?

It’s been awhile since I’ve posted a guest entry. Betsy, who writes for me today, is my former coworker, former roommate, and friend from Chicago. She’s great, as you’ll see:

Before my work switched our benefits plan, they invited us to an informational meeting with a Blue Cross Blue Shield representative, a buttload of papers, and free lunch. It was not helpful. The guy didn’t even know how much the premiums were.

When we returned to work after the meeting, all anyone could talk about was how confused they were by this new insurance. So many of us were so confused that our company pushed back the enrollment date and scheduled another informational meeting with new Blue Cross Blue Shield representatives, more buttloads of papers, and another lunch.

I kept thinking about Lindsey at these lunches and subsequent conversations I had with my coworkers about which plan everyone was picking. I know her insurance is one of the most stressful things for her about her having cancer. I believe it. I was getting stressed about just picking a stupid insurance plan that I probably won’t even use much.

When Lindsey first shared her elevator speech with me, I felt helpless and sad. I didn’t know what to do or how to react, and I took a few days to think about how to respond. Once I got over knowing that Lindsey had pancreatic neuroendocrine cancer–and after I read about it and still understood nothing more than before I even knew such a cancer existed (thanks for nothing Google)–I began to think about how I could be a better long-distance friend without intruding on her already hectic life, whether Lindsey needed me or not, and whether she noticed or not. And I suppose this led to me thinking about Lindsey a lot, even if I didn’t tell her.

Mostly I think about the unfairness, because it’s not fair that all I have to worry about is paying $10 more a month for my premium while Lindsey has to worry about thousands of dollars of medical bills. If Lindsey allowed herself to get as angry about her insurance woes as my coworkers did about that one clueless and confusing rep, she’d lose her hair from the stress! Then, her doctors would bring her in for more tests because she’s not supposed to lose her hair from her chemo… more bills… I am stressed just thinking about this potential scenario.

Why can’t Lindsey and her family have a personal insurance guru? Kind of like a travel agent, who knows how to work the system from the inside to get the best deals. So that all she has to worry about is what she feels like eating today or looking good for that date with Joseph Gordon-Levitt. Well, that’d be great, but I’m sure the insurance guru doesn’t accept Lindsey’s insurance, anyway.

So forget insurance guru. Let’s help Lindsey pay her bills. If you haven’t already, donate to her Paypal fund, so she can stay with her amazing doctors, stress about school projects instead of fighting with the endocrinologist’s office, and eat avocados and be happy.

Thanks! In the spirit of Valentine’s Day, i’ll say it: We love Betsy! And we love you, too, if you donate. Or even if you’re just a devoted reader. If you love Betsy’s writing, she blogs at Reve Rouge.

poison

I got my chemo from a different pharmacy this month and it was a little jarring to open the package and see this:

I’m not a doctor, but it really looks like, based on the labels, that I shouldn’t be taking this medication. It’s toxic. I mean, it warrants a giant caution sign and neon yellow and orange coloring and a symbol that looks a bit like the nuclear symbol. It looks like I should be calling poison control if I accidentally ingest this. Yet I just purposely ingested two pills and now i’m writing a blog. This is what is supposed to make me better? And by better, I mean stable?

I know, the risks of taking these outweigh the risks of not taking these. And they have so far proven themselves useful in controlling the growth of my tumors. But they have also, for the second month in a row now, proven themselves useful in throwing everything else out of whack.

When I first started taking chemotherapy almost a year ago now–and particularly when my doctor was considering giving me infusion chemotherapy–I wasn’t a fan of calling it “poison” or “toxic.” If I was going to have to get it, I preferred to think of it as a type of therapy. A gentile drip that did good things. The word infusion evoked thoughts of tea. Tea is one of my favorite things ever. How could infusion be bad? Then I met a cancer patient who thought differently, and he sat there calling the chemotherapy that my doctor recommended for me, “poison,” while I listened in horror. He was still here and talking to me–how could he have taken poison and lived to tell the tale? Cancer is poison. Not drugs–drugs can’t be poison too.

Now that i’m in month two of my vegan trial, and nearly everything i’m putting into my body is fresh and local and not made from animals, ingesting something as processed and as unnatural as chemotherapy seems antithetical. It does seem as toxic and as poisonous as the label says. I won’t eat the food equivalent of poison to a vegan–a double bacon cheeseburger–but i’ll pop two pills without a second thought?

It’s working, though. We’re fighting fire with fire here. What choice do I have?

And all this fresh, local, not-made-from-animals food? One month of it didn’t show much change in my bloodwork. I was hoping that my liver would feel so relaxed from not having to process meat and dairy and excess oil and sugar that whatever effect my chemotherapy had on it would be counteracted by my diet. Well, based on the first month’s results, diet is no match for chemo. Maybe a few months will make more of a difference. But, for now, it’s a little like fighting fire with a cloud.

is this something?

Symptoms of having cancer and side effects of taking chemo can be so unpredictable and transitory and unexceptional that I find myself constantly wondering: Is this something?

I feel like a hypochondriac sometimes. But with a time bomb ticking inside me, and doctors that want to know every single bodily sensation, and a mother that still asks me how i’m feeling (it’s OK, mom–I know, you’re a mother), and side effects written all over my chemo bottles, and the “usual” things that people with cancer feel floating around the general discourse… I have to keep tabs. It’s just hard to tell: Is this something i’m imagining just because I know it could happen? Or, perhaps more importantly: Whether or not it’s real, does it matter?

When I was first starting to feel the symptoms that triggered my cancer diagnosis, they were so unexceptional that they could have been anything. I went to the doctor, but I didn’t really push the matter when my symptoms weren’t resolved with the pills I was prescribed. I could live with them. They were so minor and so ordinary that they didn’t seem like something. When the doctor who ended up diagnosing me said, at my second appointment with her, “I don’t think this is cancer, by the way.” I said to myself, “Cancer? What do you mean, cancer? Obviously this is isn’t cancer. I’m 25!”

Now that I’ve seen what unexceptional symptoms can be, I am hyper-vigilant. Especially because my oncologist said, “It’s usually the patient–not a PET-CT–that detects when the cancer is growing again or whether it has spread.” I’ve been tired–is this the fatigue that cancer patients so often complain about?  I’m nauseous–or maybe i’m just hungry. I’m not hungry–could that be the chemo or is it my stomach being obstructed? But this is all just in my head. My oncologist always encourages me to call, but if I called every time I thought I felt something, I would be calling almost everyday. And I would be doing all these extra tests and appointments which take time, and cost money, and are usually annoying. So I end up doing triage on myself, but triage that is informed by very little knowledge or experience. I have reason, but: What do I know? My oncologist always asks if my feet are peeling because it’s a side effect of my chemo. My feet peel, but so minorly that it almost doesn’t seem worth mentioning. And it certainly doesn’t warrant a call. Except, he always says: “Remember: we only get upset at patients who don’t call.”

I’ve called three times that I can remember. Once, at the very beginning, at the nudging of one of my therapists, when I was throwing up every half-hour while fasting for a scan. Another time, the morning after I was sent to the hospital for a procedure where the doctor didn’t end up doing what I was sent there to have done. And this summer, when I was feeling excessively thirsty, I thought, from my chemo. I ended up just being sick, and not because my white blood cells were too low.

I have called so infrequently that now when I do, I think my oncologist must think whatever i’m calling about is a big deal. So I have to make sure I think it might be a big deal before I call. And calling, then, becomes me admitting to myself that something might be amiss. It’s me acknowledging and opening myself up to the worry that nags at me even when there’s nothing specific to worry about. It’s me saying, things are good now but they might get worse. It’s me saying: This isn’t my imagination. This is something.

But what do I know?

water under the bridge

I have become so immersed and so comfortable in my world of cancer that I forgot how weird it is to be 26, look normal, and have cancer. I have so many friends my age with cancer now, I take classes where they talk about the prevalence of cancer, my doctors are used to it and used to me, pretty much everyone I interact with now knows thanks to my video…I guess I just started thinking that it’s not so weird to be 26, look normal, and have cancer.

Today I was reminded: It’s still weird.

There’s a whole spectrum of reactions that people have when I identify myself as a patient in cancer-friendly situations (as the case today was). It’s sort of interesting to observe. I don’t get offended. I don’t feel uncomfortable. I just don’t really know what to say. I have a lot to say about a lot of things cancer-related, obviously, but on the subject of me being young and having a rare cancer, well, I don’t have much to say. What is there to say?

It happened.

Some people try to explain it, or try to rationalize how someone who’s 26 and female could end up with something that’s usually found in men over twice my age. Other people are a lot more interested in trying to explain it than I am. Again, it happened. Research isn’t quite at the point of being able to target treatments based on causes or triggers…so what does it matter? I think there’s an issue of blame with cancer, though, that I don’t often think about.

Cancer is often lumped in with obesity, diabetes, and heart disease as western ailments that may or may not be caused, or at least encouraged, by the “western lifestyle.”  And there’s often some blame associated, because if it’s just a matter of driving everywhere, not exercising enough, eating fast food, eating processed food, drinking soda, not eating enough vegetables, watching too much TV, etc, etc, these are presumably things people can control (but the urban planner in me says the built environment in many places doesn’t make it easy). However, it makes a little more sense logically to associate the latter three ailments with some element of blame or control…though I don’t think that fully explains the problem. Nevertheless, cancer always gets thrown in there too. You’re more likely to get lung cancer if you smoke so other cancers, too, must be caused by something people did to themselves. Smoking, drinking, and not recycling–right?

But i’m young. Too young, perhaps to have done something to give myself cancer. Also, I have never smoked and I have always drank fairly responsibly (I mean, I went to college…), recycled, exercised, and eaten pretty healthily. So people try to rationalize it in other ways: “Do you have a history of cancer in your family?” Yes, but nothing that is remotely related to what I have. “You’re so young, so it just has to be something genetic.” I don’t really know. I don’t really think I will ever know. It happened.

Once all the permutations of the causes of my having cancer are exhausted, some people ask questions. Others express sympathy. Some offer hope. Others acknowledge what a hassle it is. Some are just surprised. Others pretend I didn’t just identify myself as a cancer patient/cancer survivor (i mean, liver) and skirt the issue. This is my favorite reaction and I think the most common among people, especially those not in the cancer-friendly community. It always makes me wonder what pre-cancer Lindsey would do in the same situation. She might actually have skirted the issue. I might still do this now.

I was hesitant to attend an event that would put me in contact with these sorts of reactions because I don’t really need sympathy or hope or hassle acknowledgement or surprise or a change of subject anymore. It’s nice to hear. People are really nice, actually. But it happened already. I’m fine. It’s just weird to think that i’m an anomaly because from my perspective, i’m normal.

But just as my my friends and family have now gotten over the novelty of having a peer and daughter/sister/niece/granddaughter/cousin with cancer, people I meet who are initially surprised do too. And I can learn a lot from them, as I did from many of the people I met today. A lot of smart people get cancer, and a lot of smart people research cancer, and treat people with cancer, and support people with cancer in other ways. It’s pretty inspiring. And it makes me feel a little better about the hand I’ve been dealt.

Did you know that the amount of funding going toward a disease is correlated to the number of treatments available for that disease? More money, more treatments. Makes sense. So maybe the research can’t prevent what’s already happened to me–for whatever reason it happened. But there’s some promising research on genetic causes and on cures. More money, more research. So, if you don’t feel like supporting my cause, but instead want to support something more universal, the Hirshberg Foundation for Pancreatic Cancer Research is a good cause to consider.

cancer vacation

I just took a vacation from having cancer.

I have gotten to a point, it seems, with my living with this disease that I can live “without” it, too. Because that’s what I’ve been doing this past week. Being a liver, I guess, but not in the way that I usually think about it. I have been really living, and not thinking about it or about cancer.

True, some things don’t disappear: Like pills. Like chemo. Like side effects from chemo. Like not drinking alcohol. Like my scar. But these things have become so much a part of my normal life now that this week, when I was so busy living and learning about other things, I didn’t need to think twice about them. I was on vacation.

Generally, I don’t think taking vacations from having cancer are a healthy way of dealing with having cancer. Just because i’m not thinking about it doesn’t mean it’s gone. Just because i’m not thinking about it doesn’t mean my parents and my family aren’t thinking about it. If I don’t deal with the everyday, or at least the everymonth maintenance of it, it won’t just disappear like a cold. But I wasn’t deliberately trying to escape–I was on a trip for school actually–it just happened. I think this means I’ve done a pretty good job making room for it in my life.

But then, coming back from a trip like this and the reality of my health, and of second opinions, and of bills, and of insurance troubles, and of scheduling appointments and medication shipments… well, it makes me realize that I still have a long way to go.

Isn’t this the question everyone has when they come back from a vacation? Everyone has things that they want to take vacations from. What I want is to be responsible and do everything i’m supposed to do to care care of this disease, but also just permanently be on a cancer vacation. Enjoy my life, period; not enjoy it in between when i’m thinking about and dealing with cancer.

Maybe it doesn’t have to be so black or white. It’s not that I really mind going to the doctor or talking about cancer or thinking about cancer or writing about cancer (obviously. actually, I love writing about cancer). I just mind that in being diagnosed and in dealing with the emotional aspects of the disease and in being forced to do these things, I have changed. In some ways–maybe in most ways–yes, I have changed for the better.

But this week, I fit back so easily into the familiar metropolitan rhythm that I experienced in Chicago, and it felt so good. I felt so unburdened in a way that’s hard to reach now in my normal life. I spend so much time with this soundtrack running in my head: “What’s that pain in my side? That’s about where my liver is. It must be my cancer growing again. What if my cancer is growing again? What if it has spread somewhere else?” It doesn’t often turn off long enough for me to fit, and fully think about and get excited by, other, non-cancer related things in my head. I know, that’s not very mindful of me.

This week, I actually took off my “i am a liver” bracelet. I didn’t need to write–once. Aside from the few minutes per day that I had to think about remembering to take my chemo and the brief period on Monday when I felt sick… I wasn’t this person I’ve become. I was in my element. I was, truly, a liver. And it almost felt like I didn’t have cancer.

control freak

As you have, by now, seen, there are a lot of ups and downs and in-betweens that come with having cancer. Maybe this is the case with just life in general. Either way, when I write frustrated posts like yesterday’s, about health insurance; and Saturday’s, about how i’m feeling (don’t ask me how i’m feeling), I write them because these things are just part of living with this.

Unfortunately, with cancer as with life, the negative happenings are sometimes more thought- and post-provoking than the positive. Those of you who know me in real life know that i’m generally a happy, enthusiastic, and sun-seeking person. Those of you who don’t see my frustrated or sad posts and worry. I don’t want any of you to worry.

As I’ve said, this is my depository of thoughts. I deposit my words here and then they’re off my mind. I could do this in a journal, but I love the casual formality of the blogging style of writing, and I love the phrase “i am a liver,” so I keep coming back. My insurance problems, though they currently seem insurmountable, will gradually get resolved in one way or another. Soon, I’m sure I will have a new world’s biggest, most tear-provoking problem (maybe the liver transplant?). These things happen with cancer, and with life. You don’t have to worry and you don’t have to do anything. Just keep reading.

—–

And now, i’m going to write about something–one of the many things–that makes me happy. That is, begin vegan. As you may recall, I took the plunge on a trial basis almost 16 days ago. I know that’s not a very long time. Maybe it’s premature to gush about it. But i’m going to anyway.

I still have no expectations and no delusions about how my diet choices (no meat, no dairy, eggs are OK) will affect my body. Maybe they won’t. But an unanticipated effect has been the change in my mind. Becoming vegan and limiting my diet, ironically has given me the freedom to think actively about what I really want to be eating. Most of the time, I find that I really don’t really want to be eating cheese or dairy or meat–I just always did. Being vegan probably isn’t for everyone; but it’s working for me so far.

I want to buy most of my produce from the farmer’s market because I love going to the farmer’s market and I love knowing where in the world my fruits and veggies come from, I love how amazing everything tastes, and I love how much more I value and try harder to use the fresh produce I get there. I didn’t need to be vegan to make this change, but I spend less money on cheese and yogurt now (well, no money), so I feel freer to spend a little more at the farmer’s market every week. I intend to buy my eggs at the farmer’s market, too. I don’t want to just replace all the dairy and meat I used to eat with soy. I’d rather eat the real thing which tastes better and is less processed–or find new things to eat. I want to cook a lot and find creative ways to use the veggies I buy and to get the nutrients I need, and now that I don’t just sprinkle cheese on almost everything, I have to be creative with my seasonings and flavorings and dishes.

Sometimes, the amazing taste of the veggies themselves is all I need. But pizza isn’t really exciting anymore, unless you put a pile of greens and homemade tomato sauce on top of socca and call it a pizza. This arugula pesto i’m eating right now needed the saltiness that only cheese can provide…but a little lemon juice was a good substitute. I now put avocado on everything I used to just put cheese on. I think I like homemade almond milk better than regular milk–and I used to be a milk fiend.

I like these changes in my life and in my mind, so I like being vegan. I also like that I have the ability to control everything about this diet. If I am really really craving a fish taco one day, I can control whether or not I eat it (I did, minus the cheese). If i’m finishing up a frozen leftover and it has a little parmesan sprinkled on top, I can still eat it. I can decide after my two-month trial is up that I want to add back in certain cheeses, occasionally (parmesan, maybe?). If I am out and I need to eat something and nothing is vegan, I can do my best. If I miss ice cream desperately, I can have some (I don’t–but I probably will). I make the rules.

I underestimated how much I was craving some regular control over my life. So much of what happens to me I can’t control. I can’t control which doctors my insurance company contracts with. I can’t control how my body responds to the chemo. I can’t control how long I have to wait to see my doctors. I can’t control whether the cancer shrinks–or grows. I can’t control when I get a liver transplant. I can’t control how long I will live with this.

But I can control what i’m eating. I like controlling what i’m eating. One of my doctors told me recently that the the placebo effect in almost any study is 30%–even in the studies where the patients know they’re taking a placebo. I know i’m taking a placebo. But as long as it’s working, with my body and with my mind, I might as well keep taking it. I don’t think I have found the magical cancer cure. But it doesn’t matter. I feel good about it. Being vegan makes me happy.

roll the dice

I thought I already had my fair share of insurance problems. I have already spent many an hour and many a tear on coordinating the two plans I had when I was diagnosed, on changing to my parent’s plan the first chance I had, and then on getting booted off my parents’ plan upon turning 26.

I thought that the hours and tears I have already spent on insurance would somehow exempt me from having any more. I also thought that outsourcing any insurance problems to my parents would mean that there wouldn’t be any more insurance problems because my parents would handle them. Parents can do anything, right? Even when you’re 26. Mostly, I thought that paying a ridiculous amount per month for a premium for a really good plan would guarantee me a year free from the nightmare that is insurance problems.

Notice how I said “nightmare that is insurance problems” NOT “nightmare that is cancer.” Shouldn’t it be the other way around?

There is no such thing as “my fair share” of insurance problems. There is no debt of hours or tears that you can redeem for a free pass from insurance problems. Paying a lot doesn’t mean you get a lot of insurance coverage free from problems, it just means that you pay a lot.

I rolled the dice that gave me cancer AND insurance problems and now, it seems, I can’t have one without the other.

This big decision about a liver transplant that has been rolling around my head for the past few weeks, now, is a secondary decision–a secondary problem–to the real problem, which is my insurance company no longer has a contract with my doctors. I don’t feel like explaining it. It’s a lot of bureaucratic nonsense about “preferred providers” and “allowed costs” and “billed costs” that I glaze over when it gets explained to me. It’s not really important.

Why doesn’t my visit to the doctor just cost what it costs? OK–so it doesn’t, and this is where contracts come in. It’s a behind the scenes thing and I don’t care what you do behind the scenes to make the system “work,” none of that is my problem. My problem is that continuing to see my doctors is going to be a hassle. There must be thousands of people having this problem right now. And many thousands more who won’t know about it until they get a huge bill, because, somehow, this “small” issue of contract negotiations didn’t warrant mentioning in a letter.  We got a letter about the mail-order pharmacy changing, but not the fact that the people who write those prescriptions to the mail-order pharmacy–to any pharmacy–can’t be the ones writing those prescriptions anymore after December 31, 2011 at 11:59 p.m. With a few months notice I and so many others could have done something about it. Protested. Changed insurance plans. Something. Because right now–at this moment, at almost 7:00 on a Tuesday night when everything is closed–i’m stuck. It still may be that things will change. But right now, I am overwhelmed. I don’t want to change doctors. I have come this far–these 15 months–with my “team.”

My team of doctors are still the ones who I trust, who I have developed relationships with, who know my case best. I can’t get that anywhere else now, 15 months, 1 big surgery, 8+ rounds of chemo, and 5+ scans in. Yes, as hard as it may be to believe, my cancer doesn’t go away just because the contract between my insurance company and my doctors has ended. It seemed like the woman on the phone from the insurance company today thought that was the case. Well, sorry–it’s still there. It didn’t get the memo about the contracts just like I didn’t.

I’m getting off track. See, the “real” problem shouldn’t be these insurance problems. It should be that my problem, the “real” problem, my only problem, is I have cancer. I really can’t handle much more than that. Especially if I can’t roll the dice again.

how are you feeling?

Instead of saying “How are you?” or “How was your day?”, well-meaning friends and acquaintances have increasingly been asking me, “How are you feeling?”

It always throws me off.

First, it’s a question my doctors usually ask. So I have to remember who i’m talking to (not a doctor), and how much detail they want. Probably not how many bowel movements I had that day or whether my white blood cell counts are in the normal range (they are now, thank you, and i’m back on my chemo).

Then, I try to recall my automatic answer for that question, and I realize that I have none. The question comes from a thoughtful place, a place of wanting to acknowledge that they care about my health and that they’re not afraid to talk to me about it, I think, and it deserves more than the throwaway answer I would give the other questions (“Good.” and “Fine,” respectively).

Then, I wonder, am I supposed to not be feeling OK? Yes, I have cancer, so technically, i’m sick. And yes, i’m on chemo, which can make me sick. And no, no life insurance company would ever give me life insurance. But isn’t it obvious, considering that i’m blogging all the time and going about my business and exercising and continuing my vegan diet trial, that i’m feeling fine?

Then I get a little annoyed. Am I not doing enough to make people understand that having cancer isn’t only about losing one’s hair and being tired all the time and having six months to live? Cancer can be about one or two or all of these things for some people, but for me, it’s not about any of these things. Cancer is about minor annoyances like getting my blood drawn frequently, getting a shot every month, taking my chemo pills when i’m supposed to; it’s about major annoyances like organizing appointments and health insurance and bills; it’s about fear for what lies ahead and for a liver transplant. Clearly I am, at the moment, not sick in the same way that some other people with cancer are sick. At the moment, I am feeling fine, thank you, and if I was ever not feeling fine, then you would probably know about it. Because I would be in the hospital, or i’d be in bed, or I wouldn’t feel like talking, or i’d be sitting out my normal activities, or I wouldn’t be eating.

Then I think, maybe the person meant emotionally–and not physically. My emotional state goes up and down faster than my physical wellness. How am I feeling emotionally? I don’t know. Annoyed, perpetually, at my insurance and the health care system. Disorganized. Consumed by the thought of a transplant. Unsettled.

“Good.” “Fine.”

It’s amazing how cancer can ruin even the simplest of questions. It’s amazing how cancer can ruin almost everything. I was thinking about this while I was watching Crazy Sexy Cancer last week. Why is it such a big deal? Why has it sparked thousands of organizations and blogs and books and documentaries and movies? It’s just a stupid disease–why is it everywhere? Why did I let it change me? Over and over again I can say that I think it changed me and the way I live my life for the better–but would I choose it?

No.

Would anyone choose it? Probably not. Is there anything I can do about it?

No.

“How are you feeling now?”

Sad. And tired of thinking.

generosity

It’s easy to get the idea from living in and driving around LA that human beings, particularly the ones who drive around LA, are rude, unforgiving, frenzied, and sometimes, just plain mean. I think without my realizing it, this experience on the roads has expanded to color my perception of LA, and of people in general. When I was first diagnosed and realized that I wouldn’t lose my hair from treatment, this was one of my first thoughts–that the mean people of LA would treat me just as meanly as they always had despite the fact that I was now sick, and emotional, and constantly contemplating serious questions, and that, basically, the world as I knew it was shifting under my feet.

I feel a little differently now.

I still think driving in LA breeds meanness from even the nicest people (this is one of the reasons why I don’t drive), but I don’t think the rude, unforgiving, frenzied, mean attitude that people adopt on the roads here is in any way representative of the population of LA–or of the world–as a whole.

My experience over the past few months is a great example. All I did was post a stupid video and continue to write honestly and prolifically about my experience living with cancer. You all have come out–and keep coming out–to read what I write. You write me thoughtful comments. You write me nice and long and sincere  emails. You give me hugs and encouragement and emotional support. You draw me pictures. You sing me songs. You take me out to dinner or to lunch or to coffee.

You send me amazingly generous donations.

I am still blown away. The phrase “thank you”  does not quite have enough words to encompass how grateful I am for your support. I definitively don’t feel deserving of your generosity–it seems so much bigger than what i’m doing with this blog. There are so many causes to support, yet you choose to support mine. I am just some weird girl from the Internet who has cancer. Millions of weird girls from the Internet have cancer. Millions of people in general have cancer and other serious health problems. And yet when I asked for help with my medical bills and insurance premiums, you answered. My Give Forward campaign ended on New Year’s Eve, with 41% of my $10,000 goal. This 41%, along with a few incredibly generous private donations from friends and strangers given behind the scenes, has brought my total to just slightly above that $10,000 goal. When I set that goal, I thought it was ambitious. Clearly I was wrong. This will more than cover my medical expenses for this year.

Wow.

Dealing with the financial and insurance aspects of this disease have been almost more stressful for me than having the disease itself. So, in addition to covering my medical expenses, these donations are guaranteed to lower my stress level, and just make everything a little bit easier on me and my family going forward.

On a more macro level, you have also helped me recolor my perception of people in general. People aren’t their cars or their honks or their yells on the streets of LA. People are nice. When I become a planner maybe I will be able to help people feel less frustrated by the streets and the traffic. Or maybe I will be able to help shape health policy in this country so massive donation campaigns are no longer necessary to keep a person with cancer alive and taking their medications and doing what their doctors say. Either way–I will keep blogging honestly.

You will still see the Donate link at the top of my page. I continue to accept donations via PayPal. Liver transplants aren’t cheap.