What was that on my head? Lymph Node Update

My uncle Gerd (my mother’s twin brother, who was visiting the country with his wife, my aunt Susan, and my aunt Ingrid), pointed out that I hadn’t updated about my health status.

Technically I shouldn’t update yet, because my follow-up appointment is this coming Tuesday. However, I discovered last weekend that I had two new bumps on my neck, placed like a vampire bite. I found this quite depressing. Clearly whatever is going on with me is not over, and if it’s a bad something, it’s spreading pretty quickly. I spent Saturday in a funk, losing myself in novels and absently stroking these telltale bumps on my neck.

As annoyed as I’ve been at the idea that just because I’ve had cancer before, any lumps and bumps that I get are so much more likely to be cancer again (not statistically likely in my case), I succumbed to it this time. It was seeping down from my head into the rest of me now; maybe this would be the last year of my life.

So dramatic! But I sort of feel like I have to at least imagine it, prepare myself on some level. If I only have a year left, I want to be able to enjoy that year, not live it in fear and panic. So I thought about it a bit, considered the upsides. Sure, I wouldn’t ever see 40, but at least I (probably) wouldn’t have to experience the death of my parents. I’m at a good point in my life, in my career, I’m close to my family. I have good friends. My nephews are all perfect little angels, I won’t ever have to see them suffer disappointments, heartbreaks, accidents and heavy sadness. I’ve demonstrated a certain amount of potential in various professional areas; isn’t it better to be a tragic loss to your workplace and profession, someone who might have gone on to take on important leadership roles, rather than actually doing it and disappointing everyone? Isn’t there something positive about leaving while you’re on top, all unused potential without any black marks? Surely there is an upside in dying young. I’m determined to find it. It was a rather dour weekend.

In this frame of mind, the world and the general complaints of the people around me look so different. Complaints about getting older? Getting older is what you get to do when you don’t have a terminal illness, when you’re one of the lucky ones. It’s a mark of success, not something to feel sad about. With these bumps on my neck, and a history of cancer, and a feeling that I’ve already dodged an impossible bullet, I spent the weekend just hoping I get to see 40. I wasn’t thinking as hopefully as 60 or 80, just 40. It seemed impossible, too much to ask.

Monday morning I showed my bumps to a couple of colleagues, whose faces looked pretty grim. Yes, spontaneous bumps on your neck? Not a very good sign. Cancer girl has cancer again? Isn’t it inevitable? I felt myself going down that scary path in my head, so to stop it one way or another, I picked up the phone and called my surgeon’s office.

I said something like, “Hi, I had this procedure, and now I have two more bumps, do you think he needs to know about that? I’m seeing him on Tuesday, I’m just kind of…anxious…”

She passed me off and suddenly I heard the dulcet tones of my lovely South African surgeon. “Rochelle?” I felt a bit embarrassed. Surely he is a busy man. My paranoia doesn’t exactly deserve this kind of time and commitment. “The biopsy came back negative, it’s not cancer! It’s just a reactive lymph node. All good! I’ll see you Tuesday!”

I don’t know how to describe the relief of this. It was that good news I didn’t think it was really safe to hope for. It’s nothing! No treatments! No impending death! I jumped up to tell some friends, to tell my boss. Not cancer! Someone said to me: “you must be relieved!” and I thought, well, yes, but instead I felt a stinging behind my eyes that suggested I was about to cry. This knowledge would take a bit of time to assimilate. In my experience, good news is usually accompanied by feeling all the same feelings that you anticipated with its opposite, at least for short spells. So the following hours and days were a bit of an emotional roller coaster.

And now I wonder: will I ever wait for test results again without imagining and mentally preparing for my own death within the year? Cancer has made me a hypochondriac.

I’m one of the people who is going to die

Is it true that we don’t really believe we’re going to die? We know in our heads that we will, but do we entirely believe it? I think we don’t. I think there’s a part of us that somehow believes that we won’t ever die, if only because contemplating that reality is so unpleasant and counterproductive that it’s easier to put it out of your mind altogether. It’s that thing that will happen (presumably), but it’s best to create a life based on the presumption that it won’t. And then once in a while you have a brush with death, a reminder: a car nearly swerves into you, you stare down from the 44th floor at the street from a balcony, the turbulence on the plane gets a little too turbulent, and you think, I could die right now. It’s terrifying and disturbing.

I had cancer and recovered (so far). The kind of cancer I had is entirely curable 98% of the time, and deaths from it are extremely rare and involve decades without proper medical care or the detonation of nuclear bombs nearby. I was never in the position where my life was in serious danger. Of course the moment the words “cancer” or “carcinoma” get bandied about during your doctor visit, the fear kicks in and it’s like your life goes into constant turbulence on descent. You are convinced that you will die, and you are right. You will. Not of this, but you will. How is it such a surprise? A rude surprise. Extraordinarily unwelcome.

There’s an element of trust that’s part of it; when your computer crashes or makes a sick sound for the first time, you start to trust it less. Personally, I start to mourn it a little bit. I thought it was perfect, but now it’s demonstrated that its not, it’s on its way down. I’ve started on the path to replacing it. Every time it restarts you have a question in the back of your head about whether it will or won’t. It’s proven itself to be unsound (sometimes). I will start to see it that way.

This is the same process that happens with your body. It’s one thing if you don’t like to run, your feet get sore when you stand around for hours on end, you get tired after a couple pints of beer. But when something serious goes wrong, when your body proves to you that it’s capable of aiding and abetting carcinoma, you trust it less. It’s on the path to the grave, and you can see it now. Can I take a breath and get to the end of this sentence? Or will I run out of air? No longer able to know for sure the limits of your own body, there’s the mourning of that youthful exuberance, that certainty that you know precisely what you can do. As if that means you can do nothing at all.

As with a piece of technology, you get over these fears as your body demonstrates that its recovered. You learn to forgive it for allowing something deadly to grow. You put it in context, blame the environment, extraordinary stresses, consider the ways your body protected itself, closed off the deadliest stuff. You come to terms. If you’re like me, and you had a cancer no one ever took seriously as a threat to your life or lifestyle, you don’t even get an oncologist. You’re on the lowest rung of the cancer ladder, so low it’s a wonder they even use the same word. You don’t warrant special treatment ever after. You’re back in with the regular public for everything; care, percentage chance of getting (another) cancer, potential lifespan. With time, you even see yourself that way. Average. Ordinary. Invincible, just like everyone else.

But that’s not how others see me, I understand now. Tarred with the cancer brush, I see that for others I’m a person who’s going to die, unlike them. I’m in the category of people who will die. Not today, but one day. I’ve demonstrated my ability to foster and support death, like a computer with a history of kernel failures. We know that one is going to need to go to the e-waste trash pile, it will one day crash and not come back.

I suppose it’s evidence of a) the crucial place of optimism in our daily lives. I understand that we need to hope for the best, I guess it hadn’t occurred to me until I got sick just how critical that hope is. If you know you’re going to die in 5, 10, 40 years precisely, would you live your life differently? Would you throw caution to the wind, feel freed from the shackles of not knowing, or would you mourn the reality of it? I think mostly we fall into the second camp, mourning the bare fact. But the reality is, your computer is going to collapse eventually, and you’ll have to replace it. You will die someday. It might be this afternoon while walking across the street, next week on an international flight, in two months from now of a spontaneous aneurysm, or flesh-eating bacteria, or new strain of flu. The only difference in this regard between us (the currently healthy) and those in hospice is the knowledge of what is going to kill us. Not when, and certainly not if.

Cancerland at Relay for Life in Second Life

I suspect this is the last iteration of Cancerland, since I don’t think the land its sitting on will be around too much longer. So I really went to town with it. Building it and sharing it has been a great experience.

No Antidepressants Day 3

Every once in a while this year I have that moment where I remember where I was and what I was doing this time last year. 100% of the time those moments remind me how lucky I am, how grateful I am, and how much I love all the people around me, and how grateful I am for the support I received from my place of work. (I’d hug it if I could figure out how to hug a university with 75K enrolled students.)

For the last few months I’ve been easing off the antidepressant my doctor put me on last April. I realize that taking antidepressants is something our culture dictates that we shouldn’t talk about in public, but I dislike that particular taboo, and apparently people with cancer are allowed to break a few taboos. I have a “reason”, it’s “not my fault”, so it’s a little more okay to talk about somehow. (Because you need a “reason” like cancer to talk about your mental health, apparently.) This time last year I was still getting used to this drug; now I’m waving goodbye to it. That feels fantastic.

I believe my doctor’s decision to give me this particular Rx was wrong, but that’s hindsight for you. He had no way of knowing what else was wrong with me. Everyone reacts differently to thyroid cancer treatment. These are the kinds of things I was writing at the time:

Right now I feel like a wine topper stuck on top of a bottle, a disembodied personality; I’m attached to this body, but I have no idea how it works, and half the time there appears to be no relationship at all between what’s going on in my mind and how my body is behaving. I am a terrible judge at what will make me feel good or bad, what will make me cry, what will exhaust me. I can’t determine how much I can do before I hit a wall, I seem to be deaf to any hints my body tries to give me. Today I actually hit a wall in the middle of a sentence. Normally you know how much oxygen and energy you have left to say what you were about to say, but not me. Not right now. All my dials are flailing. Nothing tastes or smells the same, on the banal edge of it. While I never got car sick before, now I’m noticing it, a little, when I take the bus. Where did that come from? Twice now I’ve carried gifts onto buses and left them there, just sitting there, on the seat next to me. Didn’t even notice they were missing until days later. It’s as if I’m not really here at all.

I can’t blame my doctor for deciding to prescribe an antidepressant. I was in a lot of pain from my joints at the time, I couldn’t stop crying, I was exhausted, and I felt absolutely nothing. There were points when I felt like I was only watching myself from above, not really present. These are all classic symptoms of depression, and since I had cancer at age 33 and according to the blood tests my thyroid hormone levels were “normal”, what else could he do? He called it a “reactive depression”. I respect his decision. But I’m pretty certain it was the wrong one.

I agree that I was exhibiting symptoms of depression, but I believe they were caused by my body adjusting to the synthetic thyroid hormone, and in that dose being too low. After about a month of taking the antidepressant, my endocrinologist looked at my thyroid hormone tests and raised my dose from .175 to .200, which is a significant jump; according to normal people standards, my result was okay, but I’m no longer a normal person. So once my body was getting enough thyroid hormone, and using it well, those symptoms all disappeared. But I was still on the antidepressant.

I started to ease off of it about three months ago. At each step down you get a whole range of side effects; SSRI withdrawal symptoms. The ones I’ve been experiencing are: severe dizziness, headaches, mild nausea, generally feeling a bit out of it, and being kind of short with people and cranky. I’ve tried to be pretty open about the fact that I’m going through this, as I know it has an impact on my behaviour and my work. Fortunately I don’t drive, so the dizziness isn’t impeding me all that much. Today I’m just avoiding the stairs (the idea of falling down a set of slate stairs scares me) and taking it easy. Advil helps with the headaches, and I try to get to bed early.

So last year I was reeling from the side effects of this drug, and this year I’m reeling from its withdrawal symptoms. I’ll take it! The sun is shining, spring is here, and I know the weirdness of the withdrawal will end. So I’ll be dizzy with a great big smile on my face.

Cancerland Video, version two

Everyone I know has already seen the first video, but after watching it myself a few times, I realized what pieces were missing from the build itself. To start: why didn’t I put labels on the spaces? I had names for the pieces, like the hall of terror and the scar display room, so why don’t I put proper labels on things? I also stopped making good use of audio after a certain point in the build. I didn’t want to be a one-trick pony, but I think the audio is very effective. So I added some more. I added some more interactive pieces into my office recreation too.

It’s all a big learning process, that’s for sure. Building something like this isn’t exactly instinctual, that’s for sure, even though I think it’s hitting on some very basic communication methods.

On a tangiential note: I love youtube’s high res options. You can actually read the narrative text through it. Awesome.

Stay Hungry, Stay Foolish

Steve Jobs’ Stanford address from 2005:

Cancerland

I finally managed to get a video of Cancerland. This way you can get a sense of how the audio fits in with the visual. The text remains a mystery in this format, unfortunately. I’ll have to find some other way to get that information across. The narrative is really held together by the text.

An Open Letter

An open letter to myself, a year ago today.

http://static.odeo.com/flash/player_audio_embed_v2.swf

Scar update

Someone asked, so I took a picture of my thyroidectomy scar today. For reference, here’s a short history of my scar:

one week post surgery (mid-February, 2008)

two weeks post surgery (end of February, 2008)

about four weeks post surgery (early March, 2008)

about a week post radiation (mid-March, 2008)

today

For those who are curious, and for those facing this exact surgery. The body takes it’s time to heal. This is how one learns to be patient, I suppose. It heals at its own rate, and it probably takes a full year or more before you get to see what it will look like as a permanent scar. Even then, I wonder; there are lots of products you can put on scars these days. I put vitamin e on mine during the day, and zinc (diaper rash cream, yes indeed) on it during the night.

When do you become a Survivor?

In the SL cancer survivors group meeting today, a friend raised the question of the definition of the term “survivor”. For most of us, we understood it as being a person who has gone into remission. But that’s not the definition they use. (And by “they” I think I mean the American Cancer Society.) To them, you become a survivor the moment you get your diagnosis.

We debated that. I understand wanting to use the term that way, to help people stay out of victimhood. (Though: sometimes you really are a victim. Do we use the world “survivor” to obscure this fact? Is it healthy to obscure it?) The leader of the group is a fan of this method, and I’m sympathetic to her motives. Who wants to tell someone that they’re a victim right now, but one day soon they’re going to move into the role of survivor? (Now that I think of it, that doesn’t sound all that bad at all.) We discussed the concept at some length. Many of us had moments where we felt we moved into survivorship; for some, you become a survivor the moment you decide to fight back. The youngest of us in the group (aged 26, stage 4 lymphoma, currently in remission) says he decided to fight back a second after he got the diagnosis.

I didn’t. For the first few weeks I felt that my incision belonged to my surgeon. I wasn’t a “survivor”. I was a battleground. I felt very passive. Now, even though I’m still struggling with some after effects and I probably have another 6 months before I start to get back to being my old self, I feel like a survivor. I think it might come when you decide to claim it.

I’m not even sure what that means.

At the beginning it was only fear, a fate I couldn’t bear to think about. It was too big for me to cope with. Once the surgery was over with, I felt certain that it didn’t matter to me anymore, the treatment was already done, right? The thing was out, it was over. I underestimated the importance of that final, confirmed diagnosis. It was cancer. I couldn’t say the word. I thought I had accepted it then, but I really hadn’t.

Through treatment I felt like I was going through the motions laid out by my doctor and the nuclear techs. I did what I was told, exactly the way I was told to do it. I clung to the lists of rules. I didn’t take shortcuts. It was like dance by numbers, follow the pattern of feet on the floor. Except in my case it was the outline of my body, and my job was to lay down and wait it out. I didn’t feel like a survivor then either. I felt pretty much like a puppet whose strings are pulled by someone more knowledgeable and more powerful. I was an avatar of cancer treatment.

I didn’t feel like a survivor when the depression sunk in, when I couldn’t stop crying. When my hips burned in pain. I didn’t feel like a survivor when I struggled just to walk from my bedroom to the bathroom. I definitely didn’t feel like a survivor the day after my wedding, when getting out of bed caused pain in every joint and all I wanted to do was lie down and cry.

I didn’t even feel like a survivor when my endocrinologist gave me the first all clear. (Hopefully I’ll get the second all clear in a couple of weeks when I see her again. Apparently this life is going to be a series of all-clears, or the opposite. If you never have cancer, you don’t get told that you still don’t have it. But once you’ve had it, I guess they’re always going to be checking, and giving me the all-clear, again and again and again. Unless I’m unlucky.) You’d think that would be the moment, when you’re finished and it’s gone. Nope.

I think I started to feel like a survivor when started building it and communicating about it. I blogged about it all the way along, that isn’t what I mean. There was something pretty magical about turning it into virtual-physical form that made a huge difference. It made me less afraid. No, not less afraid: less in denial. Once I turned the experience into something concrete, and other people started experiencing it with me in this way, telescoped out with lots of discussion and questions, it was then I started to feel like a survivor.

Maybe you become a survivor when you’re no longer in denial about what’s happening to you. You survive the denial, you move past it. It’s harder to move past cancer. Maybe we need more words for this. Words that pop into mind that are useful: victim (because let’s face it; this is one of the stages we go through), battleground, warrior, survivor.

If there’s one thing I’ve learned through all this it’s that there aren’t enough words in the English language. Not by a long shot.