lucky

I don’t think about often enough how lucky I am.

I know I just wrote about how unlucky my family is. But it’s easy to get stuck in the details: whether a liver transplant is a good decision, whether I should switch up my chemo because my second opinion said I should, whether this sore developing in my mouth is an infamous chemo side effect, whether my recent blood work is any cause for worry, whether my health insurance company and my doctor’s offices will ever leave me alone with the paperwork… on top of the accident and long recovery for my dad.

Hold on a second.

The big picture says: I’m lucky. It sounds incredibly perverse, I know. But let’s look at the facts. I have been living with cancer for over a year and a half. And by living, I mean living. Having fun, taking trips, making videos, working, continuing my graduate studies. My 1.5-year survival rate is 100%. My “quality of life” is high. (sample size=1)

I have treatment options. I have so many treatment options that my second opinion doctor doesn’t mind taking a transplant off the table because there are about five other drugs or combos of drugs I can try, along with any number of other “locally invasive” (or “ation“) procedures. Maybe these aren’t cures–but they’re options. Maybe it’s complicated and every doctor has a different opinion on how my treatment plan should look–but I have a plan, however uncertain. (According to my second opinion doctor, the plan is to keep me living for as long as possible with the best quality of life possible.)

Not everyone diagnosed with cancer has a plan, especially not one as positive as mine. Not everyone has options. Not everyone can boast a 100% 1.5-year survival rate and an excellent quality of life.

People can die from cancer so quickly. It is incomprehensible to me that someone who I met briefly at a cancer event less than five months ago–and looked so healthy at the time–can be dead now. It is incomprehensible to me that I have so many treatment options–but so many others don’t have any. Or any left. I am unsatisfied with the chronic nature of my condition, but that isn’t an option for so many people. Why did I get “lucky” with my diagnosis but so many do not?

Every time I go to the doctor, I am reminded that I may not be lucky forever. My tumors are pretty aggressive on the spectrum of neuroendocrine cancer. But yesterday, after I thoroughly depressed my family by recounting another visit with my second opinion, I found myself saying insistently, “There’s no reason to be depressed. Nothing has changed.” The reason I keep blogging is because cancer keeps my head busy, not because I have health updates to broadcast to the world. I’m lucky.

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difficult questions

“How is your dad doing?”

Usually I say something like, “Um. He’s OK now, but he has a long recovery ahead of him.” Or, I say, “Well, he lived through the accident, which is good, and he’s not paralyzed, but he has a lot of healing left to do.”

It turns out this question is almost as difficult to answer as questions about my cancer.

I don’t want to sound dramatic, but I want to be honest. I don’t want to make anyone uncomfortable, but I don’t want to “cheapen” what he’s been though, and what I go through, by glazing over the details. There is no way to put into words how scary and how strange this experience with my dad has been for me and my family (and for him), but I want to try.

The day I got back to L.A. after spending five days in the hospital watching my dad’s condition worsen and then, slowly, improve, I went directly to class. Because I am in a field where people care about biking and bike safety, a lot of people asked me how my dad was doing. I thought back to the ICU that I had so recently left, and gave one of my standard answers.

It didn’t seem adequate. I had just experienced some of the most stressful and emotional days of my life (that I think were even worse than the days that followed me being diagnosed with cancer), but what else could I say? “Good, glad to hear that,” they said. And quickly, before I could do something to stop it, the conversation devolved into talk of neighbors falling off their bikes and breaking their arms. In my head I was thinking, “If only it was just a broken arm.”

Later, my friend told me I shouldn’t be afraid to make clear how serious the accident actually was. I think I need to follow this advice more. Maybe people just want to know he’s OK, or that i’m OK, and don’t want to hear the rest. But it’s not that simple. Maybe i’m here to educate people? Dads can get hit by cars while riding bikes. Young women can get cancer and not die immediately, but not get cured either.

This was running through my head Saturday night. I was at a bar with a few friends (not drinking, because I definitively can’t now that i’m on the liver transplant list), talking to a guy. He offered to buy me a drink and I said, “I don’t drink.” Then, he asked why. I hesitated.

I could have just said I was the designated driver, because I was. I thought about how socially unacceptable it is to admit you have cancer in a bar full of Cinco de Mayo partiers. “You probably don’t want to hear about why I don’t drink. It’s not really bar talk.” He said, “Well, you already told me your dad got in a serious bike accident.” This was true. He asked me if I liked to bike and I said, “I used to like to bike until my dad got hit by a car while riding his bike. Now, i’m scared.”

So, I just said it. “I have cancer.” He didn’t run away. The world didn’t collapse because I said something socially unacceptable. He asked me a few questions, I tried to be accurate with my answers. It’s still amazing to me that I can be out at bars with a full head of hair when i’m on chemo. Then, he told me his mom died two years ago from cancer.

Then, my friends wanted to go.

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what are the chances?

Something happened. One of those things that you know could happen, but you always tell yourself will never happen because–what are the chances?

My dad got hit by a car while he was riding his bike on Friday morning. The chances were decidedly low. Perhaps the chances are also low that he live through such an accident without permanent disabilities–but he did.

I should know by now not to believe in chances. The chances of me getting cancer at 25 are almost as low as the chances of me getting pancreatic neuroendocrine cancer ever. Still, I got both. The chances of my dad getting hit by a car while riding his bike are probably not as low, but they’re still low.

In both cases, we do everything we can to make the chances seem lower. I eat healthy, and exercise, and don’t smoke. My dad wears his helmet and a rear-view mirror and rides on off-street paths when he can. He’s been riding for almost 10 years.

Yet–chances don’t matter. Illusions of safety don’t matter. Previous experiences with rare, bad things happening in your family don’t matter. I’m trying not to get too philosophical here, but yet again, i’m being force-fed the lesson that bad things happen in life rather indiscriminately.

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urgency

I’ve had this post called urgency in my head for a few weeks now. I guess I lacked the urgency to actually put it down on the page.

Urgency has been a theme over my past few weeks. Now that I have been officially accepted onto the liver transplant waiting list (as of yesterday), it seems particularly pertinent. I am on the road to a “cure”–or to a life of anti-rejection medications and possible recurrence of a more aggressive version of the cancer I have–depending on who I talk to. It’s a “roll of the dice,” says my oncologist, but I’ve never really liked gambling and I’ve never really felt lucky with anything, so this is not really what I want to hear. The transplant decision is not a decision i’m prepared to make right now–or maybe ever. I am almost as low on the list as I can possibly be, so the choice is not urgent.

I have been spending a lot of time thinking about my second opinion doctors lately because they have been spending time thinking about me and because i’ve been busy this week doing the tests they’ve ordered to properly evaluate my case. I really think the difference of opinion between my second opinion doctors and my doctor doctor(s) comes down to urgency.

How urgent–how aggressive–do we need to be? Do I have the type of cancer that I will be able to live with for a long time? My second opinion doctors say, emphatically, yes. They see a lot of patients with my type of cancer, many of whom live a long time without many problems. They see me, a happy, healthy-looking 26-year-old on their exam table, and they are not worried. They are coming from a place of non-urgency. They think I will jump around from treatment to treatment with no problem, and that I will live for a long time. Their nurses, however, are very urgent to schedule me for tests and get my pathology slides and radiology reports and medical records. “I need this–stat” one of them has said to me multiple times.

Or, will my cancer soon wake up with renewed vigor? My oncologist, and presumably the rest of my medical team, also see a lot of patients with my type of cancer, but they also see a lot of patients with other types of cancer, many of whom don’t live a long time. They see me, a happy, healthy-looking 26-year-old on their exam table, and they’re happy to see that their treatments  have worked thus far. But they can’t forget how sick I was when I first came to see them a year and a half ago. They can’t forget how quickly my nausea came back and how quickly my tumors started growing again after my first couple rounds of chemo didn’t work. They are coming from a place of urgency. And they think, with a little bit of urgency, they just might cure me.

—–

In my head, my post called urgency wasn’t actually going to get this serious. My post called urgency was going to talk about school and about dating–the less serious things in my life. Everything about school has been very urgent lately. Maybe it’s something in the spring air, or this is the “sprint” before the “finish line” or something, but i’m sticking around for an extra six months, so it’s going to be a long sprint.

The quarter started less than three weeks ago, and for that whole time, everyone has wanted everything from me right now. My to-do list that my mediation teachers told me not to keep has been getting longer and longer faster than I can check things off. If I find a free moment–and I haven’t found many–I ask myself questions like, “If you found out you had only six months more to live, would you regret getting so wrapped up in doing all these things you’ve been doing?” “What do you think the other people on the liver transplant waiting list are doing right now?” “Now that I have cancer, do I really want to pursue this professional career that i’m going to school for?” Most of the time after I answer these questions I want to stop everything that i’m doing, throw out my stupid to-do list, and try to live my life free of everyone wanting things from me right now. Of course, you can never get everyone–there will still be the nurses.

A lot of it comes down to attitude. My personal sense of urgency in the face of all the urgency around me. I can be amazingly non-urgent when i’m riding my scooter on the streets of Los Angeles during rush hour (some of the most urgent places on earth), when i’m making this big transplant decision, when i’m deciding who to date or who not to date or whether I even want to date. Generally, my urgency is low. But with school, and I fear with eventual work, I just can’t seem to get to a place of non-urgency and stay there. There has to be a balance between being urgent enough to get things done, but not being so urgent that my heart is racing all the time and my breath is shallow and i’m not sleeping for fear of missing a deadline.

I’m going to try harder this week to not get wrapped up in being so urgent about everything. I can’t sustain the next 8.5 weeks of the quarter like that. You might have to remind me, gently, but urgently, if I forget.

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happy post

When my oncologist walked into the exam room the other day and saw me sitting on the table he stopped and said, “Wow–you look great!” Then he did a double take and said, “Have you gained weight?”

As an American female, this was a little strange to hear. I can, of course, afford to gain a little weight–I still weigh quite a bit less than I did before my symptoms started almost two years ago. But i’m not emaciated enough to like it if someone tells me I look like I gained weight. So I laughed, tried to silence all the American female voices in my head that wondered if I have gained too much weight, and said, “No. I weigh the same.”

Then I wondered why. Was it because my hair was up? Or because I just had a lovely spring break? Or because i’ve been hiking more? Who knows. Because I haven’t yet found any medical justification that my vegan diet is “working” in my blood tests, and I hadn’t seen my oncologist for two months and I’ve been vegan for a little over three, I’m going to take this “You look great” to mean that this vegan diet suits me.

I don’t necessarily need to be told that it suits me to know that it does. The fact that it has fit so effortlessly into my life, the fact that I feel good, the fact that I can look at a greasy, cheesy pizza or a big fat cheeseburger without really wanting to take a bite says to me that avocados and nuts and almond milk and farmer’s market vegetables and green smoothies–and being vegan–suit me. The fact that being vegan hasn’t really made much of a difference in my liver test numbers, that they’re now at “we can live with that” levels instead of “normal” or “so abnormal you can’t take chemo” levels, almost doesn’t matter so much when “You look great.”

When I started on January 2, I was vegan on a two-month “trial”  basis. I liked telling people that I was on a “vegan trial to see if I felt any different” when they asked because then I wouldn’t seem like a big hippie and have to explain any more. But now that it’s been over three months and i’m still going strong and I don’t see any reason to stop except for the occasional bacon and Parmesan cravings…I guess I have to start saying just plain, “I’m vegan, actually.” It’s weird to say, considering that two years ago I was headed the other direction.

I’m not perfect. Sometimes I eat ice cream–like when I had the best chocolate ice cream i’ve ever tasted in Porland last month. Less frequently, I eat cheese, especially when it’s in something Mexican or in cream cheese wantons and there’s no way to substitute something else (or it’s just plain delicious). But I remember every time I’ve had dairy over the past three months, and why, and I feel comfortable with that. I also feel comfortable not asking about things at restaurants that  sound vegetarian but might not be–like a bean and rice burrito from my favorite Mexican restaurant. And I still eat eggs. But they’re “happy chicken” eggs from the farmer’s market like this “happy post.”

To me, part of being vegan and a liver is also giving myself a break when necessary. And as I’ve been reminded multiple times at multiple doctor’s appointments in the past month, life is short.

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third opinions

Getting this third opinion yesterday was a bit like being diagnosed all over again.

Except this time I knew what was coming, and I knew the lingo, and I don’t feel quite as sick as I did… but none of that made it any less difficult.

In my stack of medical records, this doctor chased down the sizes of my tumors and the dates of my surgery and biopsy, my chemo starts and stops, my scans, my pathology reports, and all of the other little numbers that are so important to my doctors but that don’t mean a thing to me. He re-stated the long string of familiar words that designate, specifically, what I have. He re-stated all that i’ve been through in the last year and a half. He was happy with some of what he saw and had suggestions for the rest. I have a lot of options. Other types of drugs. Clinical trials. Treatments and procedures that go by acronyms or end in “ation.” A transplant, if all else fails.

But in between all of my options is a lifetime of watching this and making sure it doesn’t start growing again. It doesn’t seem like enough, that this is all there is–this haphazard list of treatments that might work a little or a lot, for a little time or a long time. As promising and as hopeful as each of these drugs and clinical trials and acronym and “ation” procedures sound, not one of them is curative. The doctor left that part out. He made it sound easy, like you get four of these treatments. Period. Or you spend a year on this drug. Period. Or you get this procedure done twice. Period. Or you do all of the above. You can live for 5! Or 10! Or 20! years. But when I add up all these years of life that he threw around yesterday in my head, they never add up to that much.

I know I shouldn’t get hung up on any of these numbers. Or any of these words. Or any of this. If I continue to feel good, if my treatments don’t make me feel much worse, if the upkeep is minimally invasive, this becomes just like any other chronic medical condition that people deal with. I’ve been doing a pretty good job of dealing with this so far–what’s another 5 or 10 or 20 years? That’s the whole idea of my “i am a liver” mantra. But the problem is, it just doesn’t sound like any other chronic medical condition. It sounds like cancer. Cancer spreads indiscriminately. It kills people regularly. It inspired a book called The Emperor of All Maladies. Cancer is bad.

The doctor addressed this. He said, “We live in a society where when you say you’re diagnosed with cancer, everyone freaks out” and starts looking up on the internet how long you’re going to live. “We don’t know how long you’re going to live.”

He also said, “This is a little bit like being diagnosed with diabetes.” Diabetes doesn’t sound that bad. Lots of people get diagnosed with diabetes. Hell, I was diagnosed with diabetes after my surgery, and giving myself insulin shots and checking my blood sugar three or six times per day was a pain, but I didn’t worry that it would kill me. Maybe that’s just because I had other things to worry about–like cancer.

When I look forward, I want to be able to see the things I could always see before: the job, the husband, the house, the kids. When I look forward now, all I can see is how cancer could interfere with all of these things.

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second opinions

It was a little scary but strangely refreshing yesterday to find myself at a different medical center in a different part of the city. In a year and a half I haven’t yet sought any second opinions. Now, with the possibility of a transplant fresh in my mind, and because it’s the end of the quarter and everything must happen in my life all at the same time, yesterday was the first one.

I didn’t expect much from it. After seeing all of the evaluation doctors who didn’t know me from their next patient, I was expecting the doctor to breeze in, ask me 100 questions that were all clearly in my medical records, maybe answer a few easy questions, then leave. It’s a second opinion, after all. They may never see me again. They make $300 no matter what they say.

It wasn’t like this at all. The doctor did care. The office was organized. I didn’t feel like the doctor didn’t know me from his next patient because I didn’t see any other patients. In fact, it was almost like the doctor was auditioning for my potential business. I was surprised when he said that he would push to get my case on the agenda at the weekly meeting. Why am I special? I was surprised when he offered to write his cell phone number on the back of his business card. I don’t have any of my doctors’ cell numbers. I was surprised that he didn’t ask me any stupid questions but jumped right in and attempted to answer my big question. Transplant or no transplant?

Like everyone else i’ve seen about this, he didn’t tell me what I should or shouldn’t do. But he, like everyone else, gave me a lot to ponder, a lot to write down, and a lot more questions to ask at my second second opinion–rather, third opinion–appointment tomorrow.

I never really saw myself as a particularly proactive patient before. I have always listened to my doctors and done everything they said to do. So when people say i’m brave, or that cancer’s hard, or any of these other things that people say, I say, “I just do what my doctors tell me to do.” But i’m finding that while my doctors know chemo, blood counts, anti-nausea medication, and surgery, future-telling is not their area of expertise. Telling me what to do when there is no data to support what I should or shouldn’t do is not their area of expertise. Curing something for which there is no cure is not something they can say they can do.

It’s all starting to feel very unsatisfying.

So I find myself at a junction. I don’t have the option of being a passive patient–a patient, patient–anymore.  Instead, I am seeking out–and getting–a ton of information thrown at me. Other doctors I should see. Types of chemo I should look into. A lot of procedures that go by acronyms or have the suffix “ation.” I am doing all of the things I’ve always shied away from doing: Google searches, journal articles, talking to other patients, second opinions. I don’t know quite where i’m headed. But my prescription order reads, “I will tell you everything I know–but make your own damn decision.”

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causes of cancer

When I was a new patient I hated hearing about “causes of cancer” because it immediately made me think about the causes of my cancer. And when I think of the causes of my cancer, there’s a tendency to bring in some element of blame. Was it my fault I ended up a young adult cancer patient? Was it my parents’? Was it their parents? Was it something any of us could have prevented?

These are all, as yet, unanswerable questions, particularly in pancreatic neuroendocrine cancer in a 26-year-old. But now, I don’t mind so much letting them enter my mind. Almost a year and a half (on April 25) into my life as a cancer liver/survivor, I am more welcoming of discussion about causes of cancer, particularly if it’s based in scientific fact, certainly as I have embarked on my vegan trial, but also because i’m a planner and it’s my inclination to identify problems in the world around me and try to fix them through policy. So I went to a lecture this evening on environmental exposures and cancer (given by a woman with very impressive clinical, public health, and researcher credentials from UCSF) with an open mind, a determination to not blame this on myself or my family–but not really knowing what to expect. Are there known causes of cancer? If there are why aren’t they common knowledge? And why are they still out there?

It turns out that there are a lot of environmental carcinogens that are known almost definitely to the scientific and academic communities but are either not known or not regulated out in the world. Or if they are known and regulated, they’re not enforced. Like many pesticides–including one being considered (methyl iodide) for use on strawberries in California. Like Bisphenol A (BPA; more on this in the bullets at the end). Like diesel exhaust. Like a flame retardant (PBDE) used in pretty much all foam cushions in California. It was pretty mind-blowing to hear it explained so clearly and so matter-of-factly–there was a PowerPoint with a list. I wasn’t aware there were so many known carcinogens out there. I wasn’t aware that the ones I had heard of (like lead, formaldehyde, and mercury) were known carcinogens. And I was shocked that the products we buy and the places we go aren’t free from them. Not, apparently, as much of a no-brainer as it sounds.

Of course, as with many causal relationships, there are ifs, ands, or buts that make the issues with environmental causes of cancer and other diseases murky (notice how many qualifying words I was careful to put in this post). Cancer is nearly always multi-factorial. Smoking cigarettes is known to cause cancer (and cigarettes are one of the only carcinogens known to the general public), but not every smoker gets cancer. You don’t automatically get cancer from many–or most–carcinogens. You nearly always get cancer from a combination of environmental exposures and social factors and a genetic predisposition, or two of the three, or one of the three, or some of one and more of another.

So some people choose to take their chances. We here in the U.S. particularly hold tightly to our free-market and free-choice values, so if you want to choose to take your chances, you’re free to. And god forbid regulating many of these things would interfere with our free market. After all, it’s kind of a can of worms. Pretty much anything you buy or ingest or touch, from hand lotion, to kale, to vitamin D supplements, to plastics, to imports from China, to something as basic as tap or bottled water could either have a carcinogen in it, or have come into contact with one at some point, or could be iffy from a regulatory standpoint. So where do you even start?

I could tell when I was talking to my parents about this lecture on the phone that they were rolling their eyes as I spoke. “Yeah? So what were the credentials of this woman who spoke?” We’re still alive, we’ve been living in this world for our whole lives–so what does it matter?

I don’t know. We all choose our own battles. There are things that governments can do to make some things more attractive or less attractive than others, but there’s always going to be someone who’s willing to pay all the taxes in the world to continue driving their Hummer, or, perhaps more on the subject, to smoke their cigarettes. To me, it’s less an issue of health (because I already have cancer and i’m not going to be able to cure it by eating vegetables), and more an issue of ethics, of outrage and protest that we let companies put chemicals into products that aren’t regulated, that are known to cause cancer–and, more complicatedly, that we let our world get this way. I don’t want to support that. Yes, I know if I really didn’t want to support that, I should go live off the grid somewhere or move to Mars. But i’m not that much of a hippie, and i’m already tainted by cancer, and chemo, and radiation from all these scans, so I am stuck in this mess of a world and with making do with what I can. With choosing my battles, I guess. We all do this. I do this with other things. I walk by the people who campaign for Greenpeace and for Save the Children and think to myself, “I can’t be bothered. I have cancer. I have so many other things to worry about.”

Right now, for me, choosing my battles includes being vegan. In this lecture, I learned that dioxins, which are by-products of burning (like from diesel fuel and industry), are carcinogens (like the ones we hear about that act like estrogen in our bodies and may contribute to breast cancer and other cancers). Because no one really produces them on purpose, they’re hyper-prevalent, and they’re hard to avoid, and they’re hard to regulate. But they’re attracted to and stored in fat for really long periods of time. Animals are oftentimes exposed because they’re outside and they eat things that are outside and they’re sometimes located in areas that people don’t want to live like next to freeways because the land is cheap. Anyway, animals often transfer these dioxins to us through their meat and their milk and their cheese and their fat and their (eek) eggs. The suggestion? The same suggestion that, if you pay attention to this diet stuff, you hear over and over and over–limit your fat intake. Don’t eat meat. Or at least, if you’re going to eat meat, eat organic or grass-fed. Or at least if you can’t do any of that, don’t eat much meat.

Even so, the lecturer admitted to eating grass-fed beef occasionally because she likes it. Like I said–we all choose our battles.

Some other things I learned that I didn’t know before:

  • BPA is another estrogen-mimicker that, in addition to being in certain plastics like some hard water bottles, is also in most canned foods. Fresh or frozen or glass or cardboard are better choices than aluminum cans.
  • Cannabis aka marijuana aka pot is also an estrogen-mimicker!
  • Food in plastic containers cooked in the microwave is not shown to have many harmful chemicals leech into it unless the plastic is soft or the (soft, plastic) lid is touching the food.
  • Soy, though talked about a lot as being another estrogen-mimicker, isn’t shown in the research to be harmful to health or carcinogenic. In fact, it might have anti-breast cancer effects. I don’t think this applies as much to processed soy.
  • Organic domestic labels on produce are pretty trustworthy. Organic imported labels are also pretty trustworthy. Domestic conventional labels are somewhat trustworthy (only 5% violations in outlawed pesticides used). Imported conventional labels are not very trustworthy (15-20% violations).
  • Some produce that one would think is OK to buy non-organic, like bananas, have pesticides applied to the roots (systemic pesticides) so the whole vegetable or fruit, peeled or washed or not, is exposed. The Environmental Working Group has a list of the most-pesticide prone produce to the least.
  • It’s legal to bring chemicals that haven’t been studied to market. The substances in dietary supplements (like vitamins) are largely not regulated.
  • I could probably go on…
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on being fine

This post was clearly not written by me, as you will see from the first line, because I see a doctor almost once per week and have for the past year and a half. That means it’s guest-post time again! This one was written by Bill Lascher, an old friend and a Portland, OR-based freelancer. If you like what you read (and I think you will) or if you’re tired of cancer, check out his Kickstarter project. It’s pretty cool.

This Friday I had my first doctor appointment in years.

I’d finally made an appointment because I know that at some point I’ll need a doctor’s advice, and because I believe prevention is a powerful tool and because I don’t want to take for granted the fact that I’m a–seemingly (and we’ll return to this)–healthy young man. I’m “fine.”

One reason I made the appointment was because for the first time since grad school, I have health insurance coverage. I’d been looking for nearly a year before I secured it. But I decided to look for coverage one more time, partially after starting to read Lindsey’s blog and learning more about her experience, and because I know there’s much I may not know about my health.

I’m lucky to finally have the financial flexibility (barely) to pay for insurance, despite my struggles as a freelancer. But getting that coverage, even with me essentially saying to insurers “here, take my money,” wasn’t easy for a “healthy” guy like me. It’s a wonder anyone has coverage.

Even after I finally found coverage, I was shocked how confusing it can be to actually get care. I mean, how was I supposed to know what kind of doctor I needed in the first place? For my checkup, did I need to see a general practitioner or a family practice physician? Was there a condition I didn’t know about that a trained professional would see? Could I be a hypochondriac? Could I be overthinking?

My health insurer’s web site lists dozens of doctors with no more differentiating information than their gender, age (and not always that), and location. How does that help me make efficient use of my coverage?

All these questions come from someone who is, for the most part, just living a normal, healthy life. I’m not experiencing any weird pains or inexplicable nausea (well, not usually, as you’ll see below). I’m fine (there’s that word again). If it’s this much of a pain for me, what can it mean for someone pondering having one of her organs replaced with someone else’s, among many other things, as Lindsey is?

For me, it turned out, at least for now, there not much of great concern. I’m fine.

What does that mean, though, fine?

How do I really know whether I’m fine?

It seems ridiculous, and possibly smacking a touch of hypochondria, to ask this. I don’t have cancer (at least, I don’t think I do–a tumor certainly could be growing undetected inside me). I don’t have a heart condition. My lungs function well. My blood pressure is low. I haven’t contracted any infectious diseases. Everything functions as I generally imagine it’s intended.

But even if everything didn’t, would that mean I’m not fine? By many definitions, Lindsey’s fine. I’ve know her for a few years and she’s really not much different now than she was back then. When we talk, it’s often about our shared fascination with transportation. Our conversations aren’t “How’s your cancer?” this and “How’s your cancerlessness?” that. When we do talk about cancer, we may discuss whether she’s feeling well, but we’re more likely to discuss her latest wrestlings with her insurance. In other words, our conversations are the kind of conversations I have with any of my friends. There’s nothing different between Lindsey and I that’s not any more or less unique than the differences between me and the two strangers sitting across from me at this coffee house.

And, of course, everything’s different. We all have our own things.

And that’s what I wondered at the doctor. What was my thing? Do I have a thing? How will I know what my thing is? Is that even a question for the doctor, or is it a question for a therapist–or a philosopher?

Anything could happen to me. I thought about that yesterday morning when I woke inexplicably nauseous. I hadn’t been drinking. I wasn’t otherwise feeling ill (though my back pain persisted). All I could imagine was that the night before I’d eaten a meal of roast chicken and vegetables from the grocery store deli counter. That must have been it. It must have been tainted. It must have been! And if it wasn’t, did that mean my nausea was something?

It’s this kind of thinking that illustrates what a mess we’ve made of our collective health. It’s not rational to think I have a life-altering illness every time I feel a little out of the ordinary, nor is it wise to avoid seeking an informed opinion when my instincts tell me something’s unusual.

I don’t know whether health care reform would solve this conundrum. But perhaps if our interactions with health care providers weren’t laden with bureaucracy and ID numbers and bills and payment plans we’d be less likely to wait to ask questions when we were truly concerned about our health; and perhaps if these interactions were simpler, and more regular, we wouldn’t make our health something we pile onto an increasingly crowded “to-do” list, something about which we make New Years Resolutions and about which we don’t feel empowered to make informed decisions.

I couldn’t help wondering if that nausea was a thing. Fortunately, it didn’t return today. As far as I know, my sour stomach could have been the product of all the fretting I’ve been doing about my Kickstarter, about my career, and about my life. Perhaps it’s not something. Perhaps everything is back to normal. Perhaps I’m fine.

Whatever that means.

Bill also has a blog. And i’ve written about being “fine,” too.

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evaluating a transplant

Today, Day 1 of my liver transplant evaluation, was quite a day. I was poked–4 times. Prodded–by 3 doctors. I purged every question I could think of, and 22 vials of blood, and every single drop of carbon dioxide I could from my lungs. I signed my name and repeated my birthday about 10 times. I, and my family, spent about 4 of the 7.5 hours waiting. I thought about my mortality, and the future, and what I want from my future, and every single permutation of things that could happen in my future.

Now, as I lie here on a bench at school (as I was when I wrote most of this) and think about the gravity of this decision, and how much I want to cry, and how relieved I am to be done with today, I am greeted with this view:

Things can’t be so bad with this view.

A lot of the things I think about and worry about with a potential transplant, whether it’s the right time, whether I will have to get another one at some point, whether my cancer will come back, whether my life as it is now is worse than how it will be post-transplant, whether I will live longer with a transplant than I will with cancer, whether I will be prepared mentally for the horror that is surgery, what it must be like to get that call… as my dad said so appropriately today, a transplant is like moving down a long hallway where the doors lock behind you as you walk along.

But right now, as I look at this view, all the doors are still open.

The door to a normal life is the only one that is locked. My liver isn’t functioning so poorly that my skin has turned a bizarre shade of yellow. I saw a person who was that bizarre shade of yellow in the waiting room today. I’m young–at least 20 years younger than every other person there for a transplant evaluation today. I felt very much like I didn’t belong. I’m usually happy–I spent most of the day, before I got pensive, giggling with my sister and laughing with my parents. I’m relatively fit and I eat well and i’m not addicted to anything and i’m “healthy” in every other way (unless they find something else wrong with me while they’re doing all these tests).

No doctor can tell me whether this is the right decision. No fellow patient can tell me whether this is the right decision. My family can support me, and they do, and I am so grateful that they are here for me when I need them, but they can’t tell me whether this is the right decision. But I, at least, appreciate the weight of a transplant now more than I did. The hour the nurse coordinator spent scaring us worked on me. She made me feel like a kindergartner. She made me feel like I would be tempted to drink, smoke, and do drugs if it weren’t for her. She made me feel like i’m not responsible about showing up for appointments. She made me feel like I don’t answer my phone or have it on me pretty much all of the time. She made me feel like I made my liver go bad by the bad choices I’ve made. She made me–and everyone else, I think–feel stupid and unworthy of a liver transplant.

OK–maybe I wasn’t the target audience. And maybe she was overly harsh and grumpy and condescending. But this is still a big deal, whether or not i’m at risk for not being a good steward of a new liver (I don’t think I am). I would be getting a liver that could save someone else’s life. The woman with yellow skin, for example. I could also be saving my life. Perhaps more meaningfully, I would be getting a liver from someone who lost their life. A someone with a life, with important unimportant things to do like me, a someone with family and friends who love them. A person with a big, healthy liver who dies can, in fact, save two people’s lives. These are not trivial factors to weigh as I make this decision.

Strangely, it didn’t seem like the doctors thought this way. Only one of them had read my chart before they walked into the room to see me. None of them tried to hide the gaps in their knowledge. They looked at me with blank eyes, like they had seen hundreds of other patients just like me. I felt like I was on a liver transplantation conveyor belt.  They asked when I was diagnosed and if I had a surgery before and whether I was still being treated (confusion, when I said yes), and, as an afterthought, whether I had any questions.

I have about a million questions. What is the right answer?

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