Tuesday, January 31, 2012

Waiting for My Real Life to Begin

I can't imagine who would read this blog. You know what I am sick of? Cancer. Thinking about fucking cancer all the time. Talking about cancer. Why would anyone read so much about it? It's not even affected, it's not like I am latching on to it thinking "thank god, I am interesting now that I have cancer."

People ask me 'what are you up to this weekend?' and in my head I am like CANCER. The actual answer is usually "I dunno, video games, maybe the bar on Saturday" because I do still have a regular life that continues to go on with normal experiences despite this, ahhm, setback.

But cancer is still there all the damn time. It moved into my body and my thoughts and now there isn't like a second of any damn day that I can just forget cancer and chemo. It's like it is the only thing going on in my life.

If I knew me I would avoid me so as to not have to talk to me about cancer.

The already derailed progress of my life and plans have been taken over by cancer and I get to walk around being like "at least I didn't get worse cancer."

On the days I feel ok, I go to work and people ask me reasonable questions about things I need to be doing or have already done and all I can think is "Why would I care about that when I have cancer?"

Hey at least I don't feel like shit today! Yea!

An oncology nurse even offered to get me in touch with a social worker or therapist so I can talk about my feelings about cancer.


These are not cancer symptoms, they are depression symptoms.

I get myself through the day by looking forward to the future when I will be able to think "Man, I am so glad I don't have cancer any more, but too bad I am still a depressed mess with a shitty life."

I want to think as little as possible about anything.

At least my beard is awesome.

Monday, January 30, 2012


Last chemo was a clusterfuck. I ate an expired yogurt on the way to the hospital and threw it up about 2 minutes after they gave me my superdose of anti-nausea meds.

Then we played a brief game of "find the pills in the puke" that ended in a tie. Judgment call: let's just forge ahead and pretend like I didn't just probably throw up all my anti-nausea meds.

The nurse explained "anticipatory nausea" to me. I explained expired yogurt to her. She recommend I take some of the drug I was already on (Ativan). I doubt I threw up because I was anticipating all the not throwing up that chemo brings.

Wed night and Thursday I did not feel as ... less bad as I usually do. They went rougher than normal. But that's also at least in part because I spent Thurs working from home and fighting with the vacation company about giving me my fucking money back. Lost cause, that.

Then flash forward to today. It's been another weekend not worth talking about. Sitting around watching TV and playing Skyrim, trying to eat when I'm not really hungry. I came in late to work today and I'm writing this post from the office but whatever, I'm here.

My doctor says that more people than I realized have clear scans at my point, which is why the other doctor was so "optimistic." But I shouldn't worry, it's not predictive of future problems. He wants me to meet with a radiation specialist to discuss the possibility of getting something like 20 doses of radiation.

I'm half-way done. I'm here. I'm on my way.

Friday, January 13, 2012

Partial Response

"Well, we do see a partial response, but not a complete response."

This or something like it was how one of the MGH oncologists that I saw on Wednesday (not my regular) began the conversation about my PET/CT results. I want to add that he was great and the "Oh fuck, why is my response not complete" moment was short-lived.

What he meant is that PET/CT scans show that I still have cancer. Not a huge disappointment, really, since I expected nothing less. This bloke is just that much more optimistic than I. He later added "Well of course I always hope for a complete response." Good point, really. I don't like to dream too big, you wake up one day broke with cancer.

ANYWAY. He would elaborate that what we're seeing is "significant partial response." Where cancer lit up dimly on the first PET from November, it's now gone. And where it was brightest it is now dim. Chemo, you bastard, you're actually doing it.

Had a cheeseburger tonight of all nights to celebrate. It put me to sleep for 6 hours and it will be hell to shit it out, but it tasted like victory. And Thousand Island dressing, which is my secret sauce.

Saturday, January 7, 2012

First World Problems, Part 2

When I was a kid, my mom was not lax in seeing to my moral and spiritual edification. She made sure I learned the important lessons in life. She used to say things like "Don't buck the system" a lot. One of her favorite aphorisms was "Life's not fair." I learned two things very early on: 1.) that was some bullshit my crazy mom liked to say to get away with not having a good reason for shitting on my childhood and 2.) that didn't mean it wasn't fundamentally true. I mean I was a sharp five year old. I looked around me and saw very clearly that life wasn't fair. I also put together that it was about choices. Shit can only be as fair as people want to make it, which is not very fair at all.

Somewhere later in my development I got more articulate about that. Life's unfair, I reasoned, but that didn't mean I had to be. In fact, despite the awfulness of everything, I could be patient and I could be kind. And at least as I died I could reason "I didn't let the world turn me to shit."

I've had to shuffle a lot of personality pieces around over the years to stop being so damn depressed and angry at how much bullshit there is in the world, and just try to be happy that I get to go on adventures and read good books and get drunk with great people. But some things bring me back to that angsty place where I just can't understand how the world can keep turning with so much shit piled on it.

Tying this back to my previous post, what I am trying to say is that I've been fighting all week against systems built to treat people as inconsequential. I mean really thought out, tried and tested methods to make the majority of people who have a fair and righteous cause accept the futility of their fight.

The hoops I've had to jump through, for example, just to provide the insurance company with the information they requested so that they can continue to deny my claim for freezing some sperm entail endless phone trees and busy signal fax machines. It's a system built to stonewall.

And much, much worse, the total horseshit of canceling my vacation and being told my plane ticket is non-refundable even in the instance of being too sick to fly. Polite but firm representatives sympathize with my situation and tell me it's out of their hands. Point to fine print and hide behind policies. I mean,  consider the awful brilliance of US Airways Customer Relations department having no phone number that you can call! So that you can vent all you want with scathing e-mails and receive back cookie cutter responses apologizing for your inconvenience and repeating their refusal.

There are companies literally just pocketing my money for absolutely nothing. I paid for things I felt I had to do and things I don't get to do because the universe decided "you, buddy, you do NOT know a thing about suffering" and threw some cancer at me. While I shell money out for co-pays, earn less because I'm too sick to work, and watch my enormous student loan debt go into repayment; while I regret life choices for the one thing I said I'd never let decide my course, stupid stupid money; even while I get sicker there are people sitting on fat stacks of cash earned by just this kind of chicanery.

Sorry you think you should get the thing you paid for, or your money back. Sorry your reason is an illness out of your control, taking over your life and making you feel like shit for half a year. But I have your money now, so why would I give it back to you? Then I would have less money.

Persistence, right? Get mad! Never surrender. But it turns out I have a much more important fight to fight.

Thursday, January 5, 2012

First World Problems, Part 1

Mexico trip has been canceled. The first and most important take-away here: this isn't a choice I made that it makes any sense to question. There isn't an alternative "But maybe if you..." or "Did you consider..." situation. At the beginning, it was worth waiting and hoping, because 1.) my diagnosis wasn't 100% clear and 2.) my treatment plan wasn't totally ironed out and 3.) my physical response to chemo had yet to be experienced. Even my doctor advised me to wait it out a bit. Now my doctor is on board with my decision, which I look at much much less as "I chose to cancel my Mexican vacation" but rather as "Cancer prevents me from going to Mexico right now." Yes, this sucks hugely, but that's the way it is.

Here is why: the longer I do chemo, the harder it gets. The riskier it gets. I have bad days and I have worse days. Passing bouts of headaches and nausea. My body just doesn't feel good. It's busy doing a lot of gross things, like dying inside and being poisoned.

If I am not meticulous about my health, I experience discomfort immediately. I need lots of sleep, proper hydration, and I have to make sure I don't get too stressed out or I start to feel sick. Caffeine and alcohol have to be consumed in moderation (understatement) and my weight has to be watched carefully. My immune system is getting weaker every day, so if I catch the most harmless of bugs it could make me dangerously sick.

While a relaxing vacation may sound like just the ticket, the thing of it is I can't actually take a vacation from having cancer. That's the point of vacations, you leave your worries behind. And party a lot. I don't get to do either. And at the same time I'm taking a huge risk, because in Mexico I'm far away from my doctors and my hospital and in the hands of who knows what health system.

If you're me, you get it: there is no choice. Going away in the middle of "waging my war against cancer"* would be stupid. I'm not chickening out. Take my word for it. I have no desire to be anywhere like 85% of the time besides my sofa. Or my bed. I'll travel and celebrate when I stop feeling gross every day.

If you're supporting me through this crap, the best thing you can do is accept it. Go to Mexico and leave me behind in wintry Massachusetts to do chemotherapy. Sounds pretty crappy, I know. But the last thing I want is to damper anyone's vacation because I can't be there. In fact, the opposite. Please have more fun than planned. For me. I want drunken sloppiness to occur in my name! When people get back, I want to hear crazy stories of awesome things that happened when bad decisions were made (stay safe everybody) because y'all were like: Should we call it or have one more round? One more round, for Scott.

*If you haven't watched Norm McDonald's "Me Doing Stand-Up" then you don't get why this is funny. Maybe you don't have a Netflix streaming account, or a desire to laugh your face off.

Monday, January 2, 2012

Dr. Horrible Is Taken Already

Happy New Year everybody! I hope, like me, you rang it in in style, trying to make yourself hungry and watching Clone High with your girlfriend. 4 chemos down, only 8 more to go! My hair is really starting to come out now, it's getting a little weird. Which is just how I like it.

What else, what else. I have a PET scan scheduled for Friday. So when I meet with my doctor before my next round of chemo (the following Wednesday) he will give me those results, let me know if the chemo's working. Which it probably is, chemo is notoriously bad for cancer. But if it's not quite cutting it, we may have to throw some radiation in the mix, and I do not want that. All the literature says it comes with lots of feeling shitty and absolutely no super powers, except possibly mutating small children.

Although. With no hair and a mutating babies superpower ... I'll be working on a villain alias and signature catchphrase just in case.