Leaving the Box

"Perhaps all pleasure is relief."
- William Burroughs

It was this quote that came to mind several times during this whole ordeal. Once, last week when I discovered that my AFP markers were at 5, well within normal range, and thus I was cancer free. Another time was after taking a particularly painful shit. Now I understand why childbirth provides so much pleasure. Its the pleasure of "Finally!! The unbelievable pain is starting to go away!!!"

And after that, its amazing how quickly everything else stabilizes.

I was on the bus last week, heading to work, and my phone started buzzing. I knew who it was, and didn't waste a second thinking about what the news could be, I picked up apprehensively and cringed "hello" into the phone.
A few seconds later.
"What? I'm okay??" I was shocked and... alarmed and ecstatic. Even being optimistic can't prepare you for the joy that is normal alpha feta protein levels. Excitement grabbed me by the face and pulled me off the train. Don't listen to people who think it's a good idea to expect the worst so that if it turns out okay you'll be pleasantly surprised. Trust me, there is no way of magnifying the intensity of emotion I felt at that moment. Pure uncut relief. Flowing to every part of my body. I wanted to scream. I wanted to stomp on the ground and reach into the sky. I wanted to get wasted beyond recognition, run through the streets naked and bleeding. I wanted to punch a hole through a windshield, tears streaming down my face.

Instead I smiled. My feet managed to get me across the street and 10 minutes later I was at work, glowing and raving to my co-workers about the good news. 2 hours later it was like it all hadn't happened.

With chemotherapy you get to enjoy an accurate time-line. The doctor places you on the line and points, "There! That is where you have to go! Just make it to there, and you'll be okay!" So you walk and walk and walk, and eventually you make it. Then you get picked up and tossed back into the real world, with its uncertainty and unfathomable length. Back to being an adult. Back to a more complicated existence.

Let's say it requires a certain reframing of priorities.
But make no mistake about it, not a single bit of me wants to go back in the box.

Reckless Optimism

I highly recommend not dealing with your problems if you can possibly avoid doing so. You will always be faced with difficulties that will only resolve themselves with time. These can not be dealt with by employing the labor of hard work or heavy concentration. You must wait, it is out of your hands, and there is little you can do. It is for these problems I recommend being optimistic and getting fucked up. Drink! Go raging! Optimism does not come without a shot of something. Try 40 proof.

Look, I know people probably think I'm fucking around here, but this is something I'm pretty sure about. I have these AFP marker results to look forward to tomorrow and the only thing I can do right now is wait. The only thing I can control is my own personal psychological health. I've decided there is no reason to prepare for the worst. When something bad happens, we deal with it. In the mean time, I've decided that I'm cancer free until someone says otherwise.

I went and got fucked up this weekend and had one of the best times of my life at a club. I walked in, not in the greatest mood, and walked out at closing time in a state of complete bliss. Not because of alcohol, although that definitely assisted me in letting go, there were just so many attractive women, and I was so on my game... I don't want to oversell this, I'm just happy I've gotten so much better in clubs. I easily could have been at home wallowing in despair like I think I did on Friday night. But I didn't.

I saw Babel on Saturday afternoon, and maybe that had something to do with my decision. There is one particular scene where this lonely deaf Japanese girl is drinking and taking pills with her friends before heading to a club. I watched that scene, and suddenly realized what I've missed the most over these last few months: Getting fucked up.
Not that I used to take pills, or go overboard with drinking, but just seeing people putting their problems to the side so they can have fun and do what they want... it touched me.

Never again will I take for granted what it means to get drunk or twisted or high. How incredibly special it is to be able to do something reckless and physically damaging in the pursuit of mankind's most precious commodities: Our happiness and sanity. Think about what it means to make that sacrifice. To say, YES, this is what is more important to me. This is what makes life worth living. Cause its not merely breathing that makes existence valuable. And it's not merely our heart pumping blood through our veins which makes us get up in the morning. There is a difference between being alive and being alive. Anyone who goes through chemotherapy or lives in Connecticut should understand this distinction.

The truth is, life on its own is not worth living. Let that fact guide you where it may.

Day 63 - Uncertainties

This was supposed to be a celebratory post. Hooray! I survived testicular cancer and made it through 9 weeks of chemotherapy! I might even add something about what lessons I had learned, and how I've grown a lot and how this whole experience has made me a better person. I might even add that I'm glad I got cancer, just so finally I can say something significant happened to me. Something I had to fight and defeat. This post was supposed to be all of these things. But it won't be.

After I got my right testicle removed, about 3 months ago, I had a doctors appointment where my urologist expressed surprise at the results. My AFP markers had gone up. At first he thought it was a mistake, if anything they should have gone down a little, so I got a second test. But it wasn't a mistake. I was not cured. At that point I was told I would need chemotherapy, and so I started this site to help me through it.

This is my last week of chemo. This was supposed to be my very last day. It was. Then about an hour ago I got a phone call. My last AFP marker results report my count as having gone up to 11 from 4. The nurse assured me it was probably a mistake, and I should come in on Monday to retake the test. She said it would be very unusual for the markers to go up, and my doctor is confident that the results are incorrect. I can't say I'm quite as confident. Intellectually, I understand how strange these results are. My counts had been going down, so the cancer was clearly responding well to the chemotherapy. Also, I got this test this Monday, which is nearly right in the middle of my 3rd cycle of BEP. Indeed, it seems strange that the cancer could start increasing before the treatment has even ended!

I understand this fact... but I don't feel it. I feel uncertain, I feel scared. I feel like I'm back to the beginning, sitting in the urologists office, listening to him explain that there's probably some kind of error with the test. It's been 9 weeks since then and after all I've gone through I still feel the same nerve endings in my brain firing. The same warning bells blaring. I can tell myself be calm, don't worry, just wait for the tests.
But my emotions don't understand English and, in any case, will not listen.

Day 51 - Sleep with Dreams

Ow. Ow my eyes. Ow. The light at the end of the tunnel is getting really bright. I'm almost done here, but I already feel like the worst is over. The end of last week was pretty bad for me. I didn't get sick, but I genuinely felt in the gutter, and getting shots every day felt a bit like routine torture. I made a pretty big realization about chemo this weekend though: A lot of the torture we do to ourselves.

The worst thing about chemotherapy is that not much is going on, but there's a large amount of time to reflect upon it. You're waiting for your body to flush out poison and you have dozens of hours to reflect on what that means. What that feels like. What it smells like. I noticed I didn't smell like me. I'm not sure if the chemo affected my sense of smell or I if could literally smell the chemo in my sweat and piss. Whatever the reason, while I lay up in my room it was a constant morbid reminder of the sickening nature of what was happening to my body, and this had a proportional affect on my psyche.

My vacation from having a life was stupid. Yes, I was slightly immobilized by chemo, but to just give up and stay inside during heavy chemo sessions was a horrible idea. The human brain should not contain itself in such tight quarters for such a long time. You need to allow yourself to think about other things. Go on walks, go to coffee shops. There's always other things to do besides partying. But if you put your life on hold, you'll just make things worse and become more consumed by the chemo. More immobilized.

I honestly think I didn't dream during the whole week. Maybe when you're focused exclusively on chemo, there's nothing to dream about. But on Saturday night, I sat in the darkness for hours thinking about my life, my career, and exactly where I was going next. It felt so good to be thinking about something other than chemo, I kept it up all night. I had my first dream in a week, and then another and another. And none of them were about chemo. They were about opportunities, goals, and women. That night I figured out where my life is going to go next, instead of wallowing in where it has been.

Things are going to be different after this is all over. Convensional wisdom promises everything returns "back to normal," but why should "normal" be behind you? This experience has changed me, and it has become a part of who I am, perhaps more so than where I grew up, or my heritage. The new normal will not be the old normal. It will be better, more enlightened, more aware.

The light at the end of the tunnel is bright, and when I look behind me, the light at the beginning of the tunnel is so dim in comparison. And so I step forward to normal.

Day 46 - Lucky Numbers

I just cracked open a fortune cookie. My fortune is: "A good time to finish up old tasks."
Hmmm... that's inspiring.
On the back I have some lucky numbers, but I think I'll just skip over those.
Chemo patients do not play the lottery.

Cancer is a luck based disease. You have something like a 33 percent chance of getting cancer in your life time. If you get cancer, you become a percentage. 33 percent. Once you get used to that identity, you find out that out of people with testicular cancer, Embryonal Carcinoma accounts for 20 percent. Guess a number between one and 5. You got it. Lucky you.

Then the doctor starts telling you how if you opt to go with surgery on your lymph nodes there's an 80 percent chance the cancer will stop right there, and you won't have to go into chemo. But you're not listening. You already know you are 20 percent. 80 percent chance of success might work for someone who is 33 percent. Not you. You'd ending up going into chemo anyhow. Might as well get it over with.

Besides, a 98 percent cure rate sounds good. Then you start thinking. Could I be 2 percent?

Day 43 - How to Stare at the Wall

- so one day your white counts don't go back up as expected
- so the doctor prescribes a subcutaneous injection to boost them artificially... Of course there's side effects
- so your arms start swelling up painfully like you've lifted 300 pounds, and the doctor tells you to get ibuprofen for the pain,
- so you start taking pain killers and your stool gets hard and jagged
- so you shit blood and the nurses say the swelling has swallowed up your veins,
- so they stab you in the arms as you silently record the more painful angles of attack with closed eyes and convulsing hands.

***

It's Monday as I write this, the first day of my last cycle. 7 more days of shots. Tommorrow, 6 more days of shots. Wednesday will be particularly special: 5 more days of shots.
Thursday is getting ahead of my self.

I will be devoting this week to getting by.
Stop trying to enjoy yourself.
Drink more water. Eat more Protein.
Get used to the idea that protein is crunchy and comes in chocolate shake form.

This week I will devote to staring at the wall.
You'd be amazed at how satisfying staring at the wall can be.
You sit. You don't think. You don't blink.
You uncross your legs. This is not meditation.
You are not reaching a higher plain of existence. You are staring at the wall.
You are not drawing greater appreciation for inanimate objects. Do not pay attention to the wall.
Sit, stare, and expend as little energy and thought as possible.

Do not develop a mantra.
Do not fantasize.
You do not accept calls from god.
You are sorry, you can not come to the phone right now.
You are sorry, but you are not here.