Iliad

Aeneas his contracted body bends,
And o'er him high the riven targe extends,
Sees, through its parting plates, the upper air,
And at his back perceives the quivering spear:
A fate so near him, chills his soul with fright;
And swims before his eyes the many-colour'd light.

I had the Iliad with me in the hospital. I've been reading it forever. I've been going back and forth between Chapman and Pope's translations because they're sort of legendary. The above is from Pope.

The scene is Aeneas, son of the goddess of love, warrior of the doomed city of Troy, looking up through the hole in his shield. He had raised it over his head to deflect the spear of the mightiest of Greek warriors, Achilles -- only the spear has shot right through it and is next to him, stuck in the ground, having missed him by inches.

What about this classic, epic representation of a man in the moment of realizing his own mortality seems relevant to me right now? Can't possibly imagine. Probably it's just because I love the expression "riven targe" so much.

But the most mysterious part of it is that last bit, Pope's invention. If you almost die, is there a many-colour'd light that you see? The physical manifestation of a rapid succession of flashbacks, perhaps? What is it about the close call that results in riven light? In seeing the many colors that make up the white?

Bananas

If I told you "we gotta get rid of all these apples. They're driving down the banana sales," well you'd probably think that sounded fishy. If you asked me "And what do you do, exactly?" and I was all "Who, moi? I'm a banana salesman" ... you'd probably not go along with that scheme. Seems a little self-serving, you'd think to yourself. Right?

That's about what I see going on in the world right now now. Yea, that's right! This is a politics blog now. </readership>

On either side of the aisle they say a lot about what they will do and even what they have done. But if you look at what they've ACTUALLY done and who really benefits... it starts to look like they're all banana salesmen.

And they're getting rid of all the apples.

I actually have five insurance companies right now. Does that seem weird? Five different companies insure me in different ways. One of them wants the government to pay so it doesn't have to, and they think it's MY job to fight that fight.

Also one of the overlords at Capital One gave some of my student loan debt to his friend, the overlord at Discover, so I officially owe my ass to them now, too. They don't break my legs, but they do try to ruin my life. Got double-charged in the same month I stopped getting paid. That's not what you want. That's some fucking CAHOOTS.

Oh, my steroid dose is down. I have feelings again and I only bake every other day. Oh! Superbowl idea: cookies and what do you know? They're little footballs. Chocolate frosted with white icing for the laces. God that would take all day.

Nutbars

Distrust writers. I distrust writers. They're all narrating themselves far too much in their heads. It can't be fucking healthy.

The BiCNU damaged my lungs. That's one of the chemo drugs they gave me. The one that was massively recalled in the days just after my transplant. Which my hospital neglected to address with me in any official capacity. And even ignored my request for more information. But anyway.

It's not abnormal for this lung damage to happen. Something like 20% of people, it turns out, are poisoned by poison.

The damage is reparable so long as I take a bunch of steroids for a month or so. Pretty sure Prednisone has been considered an extenuating circumstance in murder trials so if I seem a little off you will have to forgive me.

I'm not totally sure what's behind my manic purposefulness of late. It's easy to assume steroids is the reason why I can't stop DOING something for five fucking minutes and just sit and relax. And maybe it is. I think that's kind of what steroids do.

On the other hand, maybe being trapped in my own sickness for so god damn long has made me absolutely nutbar for being able to LIVE MY FUCKING LIFE FOR HALF A SECOND.

All this energy going towards packing lunches and cleaning and hanging out with fall produce. It's only going to get me so far. Then I'm going to have to start writing again. And that just seems like the craziest outcome of all.

-30-

Recovery's been fast. Mucousy, but fast.

The terrible mouth sore pain drops away when your immune system starts to recover. Turns out your immune system is gross, though. I will not miss having this taste in my mouth.

After a couple of days shedding medications and side effects, they're convinced I'm good to go.

PICC line is out after one last platelet infusion and I'm packing up my room.

Best. Birthday present. Ever.

Whole

After 5 days of a white blood cell count of 0.1 or lower, today's is 0.2.

That minuscule change means my body is starting to make cells.

In a few days I should be out of here.

Parts

Another tragically un-holistic thing about modern/Western medicine that's really become an issue for me today is nutrition.

Background information: Despite receiving a blood transfusion yesterday for low red levels, my hematocrits were even lower today. I'm really bottoming out. I'm getting more blood as I write this and I'll need platelets after. And more blood after that.

Also, I have developed painful throat sores that make swallowing and speaking very difficult.

So here's the thing: getting any medical care provider up here to NOT waste my crucially low energy having the same, redundant conversation about my pain management options is impossible. I've hoarsely explained four times in 12 hours that I simply can't start chowing Oxy. It makes me light-headed, even dizzy, possibly pukey.

It's like these people don't understand that I've done this outpatient. They just give you a bottle of pills and send you home! Turns out, I am the best at managing my own pain. Because I am responsible, and attached to my nervous system.

I know there's guidelines and liability issues and whatnot. I need someone to work with me on this process. I need it to be about me and my unique needs.

What I've learned is that I can take Oxy, for sure, but for my own comfort I really need to taper in my dose, start small, and take it with food.

And there's the fucking rub. Getting anybody to talk to me about food is impossible. Every conversation I've had about nutrition has become one about morphine. Morphine is like the bottom of the food pyramid around here!

Finally one confused, beleaguered nurse was like "Do you want me to page the nutritionist?" YES, for the love of God. Once again, the more basic the issue (food, feelings, taking a walk) the more we need to call in an expert.

And thank the baby Jesus, because I already met with the nutritionist once right after my admission and she was awesome. Now she's hooking me up with frappes, Ensure and organic smoothies.

So I was also able to say to my nurse, "Don't you have Ensure?"

She dubiously retorted, "Yea, but most patients don't really like it."

Well, there you have it. I'm not "most patients." I'm MEEEE and I need someone to actually listen and respond to MY needs.

This is all in some part due to today's nurse. Most of the oncology nurses are freaking saints. They've been taking really good care of me. But I really need a nurse who is patient and a good listener, and my nurse today is neither of those things.

Sleep Ritual

Start with the feet. Ask: "Where have these feet walked today?" Think of the places your feet have been. Then say, "these feet have walked in this world."

Then the legs. Ask: "Where have these legs stood today?" Probably the same places as your feet. So think "these legs have stood in this world."

Now your hands. What have these hands done today? These hands have worked in this world.

Arms. What have these arms held today? These arms have been open to the world.

Now go to your heart. This gets a little trickier. You need to ask: What has this heart felt today? You don't need to feel it all again. It doesn't need to all make sense. Just know what you felt and say, "This heart has felt the world."

Finish with your mind. This is the greatest challenge. You will ask: "What has this mind learned today?" and you will be sorely tempted to tease out the details, to analyze the mistakes, to replay the events and to imagine other scenarios.

But the point is to remember that you've experienced things that will make more sense in time and say "This mind has learned about the world."

Then you are ready for sleep.

Help, I'm Alive

Today, 11 days in, someone addressed how I am doing emotionally / psychologically with this arduous experience of suffering for the first time.

Frankly, and this may be the paranoia of the institutionalized, I think it was because I asked for tissues and my nurse intuited that I'd been crying.

A nurse practitioner came in and I had the same conversation for the 4th time in 2 days about why I can't sleep: my heart is pounding away in my chest. All day and night I can feel it, like a scared rabbit trying to run away.

I tried some deep-breathing / relaxation stuff that has helped in the past but in my current state it makes me light-headed.

Constant blood pressure and pulse monitoring (and another EKG) are sufficient to convince the monstrous many-headed beast that is Western medicine that my heart is not beating harder. I am simply more aware of it than other people. Lucky me.

Having half as many red blood cells as anyone reading this post has, I'm sure, nothing to do with it.

The recommendations were that I take a sedating anti-depressant called Trazodone and speak to the hospital social worker as soon as possible. He doesn't work holidays or weekends. That's not a good time to have feelings in the hospital.

He did not suggest using clonazepam, the drug I am already on that I already know works for me, because he doesn't know that and it's always constantly my job to explain myself and what I need over and over to the endless parade of care-givers in order to receive the care I need.

Here's what I did instead: I wrote a blog post (this one and another, sort of a prose poem).

I called my girlfriend, the best listener in the world, and vented my frustrations with the system that currently has me in its fumbling, insensitive talons.

I took half a clonazepam.

I fucking cried about it.

I read some poetry.

Then I felt better.

I can't help but feel that the advances we've made scientifically in treating illness have come at a steep price.

Counting the Days

I didn't say much about the stem cell procedure. It was pretty simple. I just laid there and received my cells back. It put a funky taste in my mouth so I ate some Jolly Ranchers. The only thing intense about it was how there were six fucking people there besides me. Made it feel a little less routine and harmless!

Now we are into positive days. From here we count a lot of things. For example, my blood counts are supposed to trend down until they just about zero out around day two or three. By "counts" I mean things like WBC, ANC, HTC and PLTs. Here's the skinny:

WBC: White Blood Cell Count (Normal Reference Range: 4.5 - 11)
White blood cells help you fight infection. Not having these is what keeps me in the bubble. As of Day +3 (my 10th day of actual incanceration) this number has gone from 0.6 to 0.1. Yikes! But this nadir is part of the plan.

ANC: Absolute Neutrophil Count (Normal Reference Range: 1.8 - 7.7)
Neutrophils are a kind of white blood cell that fight off infection. This is where the word "neutropenic" comes from and this count is the single most determining factor in my release. It needs to be above 1 (or 1000, depending on how they report it) and trending up. My counts could be inflated a bit falsely because I am on a drug that encourages mass production of these puppies. But fear not, they are all dead or dying. Day 3 count: 0.03.

HTC: Hematocrits (Normal Reference Range: 41 - 53)
Red blood cells, basically. Low hematocrit counts (below 22ish) mean you get blood transfusions. Symptoms of low HTC counts include anemia and feeling like FUCKING ZOMBIE DEATH. Today's verdict: 26.4.

PLTs: Platelets (Normal Reference Range: 150 - 400)
Platelets help your blood coagulate, so that when you get cut, you don't just spurt all your needed life juices all over the place until you DIE. I need to not get cut in the near future. This is part of the reason why they are hospitalizing me also. At least if I am injured I am already here... my chances fare much better that way. Anyway as these counts plummet (below 20) they will also give me platelet transfusions. Hopefully low platelets will not be a huge problem. Currently the number is 49.

And that's how you superchemo.

Code Blue

Certain things about hospital life aren't like you'd expect. There's a lot of people with your care in mind, but there are still ways you need to advocate for yourself. Learning to speak up about what I feel I need has been difficult even for a sharp, stubborn bastard like me. I'm surrounded by doctors and experts and it's easy to go with the flow, listen to the statistics and assume everyone has your best interests at heart.

The first incidence of real self-advocation was when I asked them to stop giving me Ativan. I can't prove it, it could be all in my head (har har -- it's an anti-anxiety drug as well as anti-nausea, you see) but I really felt like it was doing more harm than good. I was surprised when my caregivers listened and said things like "you know your body best."

The next thing was poop-related. In my mind it's like CSI: Scott's Colon up ins this place, so I've just been waiting for them to tell me what I need to know about it. I finally had to level with my nurse and say "Listen, there's getting on a good chance of me sharting in my sleep. Can we do something about this?"

The answer was hedged more than I would have liked. Not right away, is the unfortunate answer -- not before some more crack CSI teams (a pun!) investigate. But it started a process that might lead to Immodium, so once again opening my mouth was the right call.

My nurse leveled back with me: if you have an accident, she said, it wouldn't be the end of the world. It wouldn't be your fault. The chemo we gave you has done this to your body and we're here to get you through whatever happens. Small comfort (but some, I guess).

Later that night, my neighbor coded. Code Blue. Now if that isn't something that puts all our wet fart problems into perspective.

Code Brown

Probably the most invasive thing about living in Superchemoland is that not a single micturation (it means peeing) or bowel movement is allowed to go flushed. All of it must be examined and discussed by a team of doctors, nurses and lab technicians.

Freud teaches us (and his teachings are greatly clarified by followers like Otto Rank, Norman O. Brown and Ernest Becker) that anality is about creatureliness. Culture teaches us early on to feel a sense of privacy and even shame about what comes out of our bodies because such excretions link us via the body to death. Repression of our own mortality means repression of such unpleasant aspects of existence (and focus on the borrowed power that the more grand, heroic symbols of culture offer.)

This isn't to say poop can't be talked about. It should be managed as all anxieties are: with humor and acceptance (and with acceptance, even its own kind of pleasure.) But it's one thing to ask "What was Tigger doing in the toilet?" and another thing to get used to telling a new person every day "I took a shit" so they can essentially clean it up for you.

Childhood feelings about poop do not get unlearned easily. Thankfully, I guess. It should be hard to start sharing your poop with everyone just because someone asks. But until this process is over, it's just one more thing making me long for the comfort and privacy of my own home.

Reboot and Rally

Day Zero: that's what they call it. The superchemo's all gone in (days minus 5 to minus 2) with an extra day just to keep throwing up everything.

Today they bust out that bag of hard-earned half-frozen stem cells and shoot 'em on into me so I can start to recover. Or commence what my doctor calls "the crappy phase." I guess both things are true.

If there's somehow a drop of cancer left in this wretched body, or a cell of it in that bloody bag, I am fucked.

Nothing

I spoke aloud this morning to -- cancer? chemo? the dark god of pestilence or the supposed supreme one that sits in judgment? I don't know.

I said, "Is that all you got? A little vomit and they give me a popsicle."

I call that a win, bitch.

It's comforting to know that nothing was listening.

The End Is the Beginning: A Super Soundtrack to Superchemo

1. Smashing Pumpkins - The Beginning Is the End Is the Beginning
2. Nine Inch Nails - The Way Out Is Through
3. Abandoned Pools - Blood
4. Dandy Warhols - Rock Bottom
5. Bright Eyes (with Neva Dinova) - Black Comedy
6. Elliott Smith - Oh Well, OK
7. Azure Ray - Rise
8. Sam Roberts - This Wreck of a Life
9. Avett Brothers - Die, Die, Die
10. Jimmie's Chicken Shack - When You Die, You're Dead
11. Bright Eyes - Road to Joy 
12. Incubus - Look Alive
13. Beck - Golden Age
14. Citizen Cope - Sideways
15. Blind Melon - Change
16. Conor Oberst - Get-Well-Cards
17. Dandy Warhols - Big Indian
18. Rilo Kiley - A Better Son/Daughter
19. Ben Folds - Not the Same

Knocking Me Down

There's not really any words. I think I give up on blogging.

Now starts the 4am vital checks, the 5am chemo, the 7am litany of invasive questions. Being tied to a pole by an angry stab in the arm. You don't get privacy, time or dignity. If you're lucky, you just get out.

It's their antiseptic prison, I'm just living in it. If you call this living.

Some day I guess I'll be grateful I'm not dead.

Family

Finally had to lose my shit at my mom.

She's been pushing my buttons my whole life anyway. She pretty much invented my buttons in the first place.

When I was 17 she tried to convince a surgeon not to anesthetize me during testicular surgery. Not like, during a pants-on appointment, but as they were pretty much wheeling me to the O.R. with nothing between me and the world but an irrationally one-sided garment.

She told me she didn't like the idea of me being knocked out, which is really her way of saying she doesn't like the idea of her being knocked out. So she was going to ask some questions.

I told her if she was somehow able to convince anyone to even try cutting my balls open while I was awake, I would rabbit.

Thankfully, when she made her pitch, they turned her down. Because doctors know what a TERRIBLE IDEA that is.

Now she is calling family members and telling them things I let my doctor explain to her, but advising them not to mention it to me. Because I don't know yet. She tells them "he hates to talk about it" because the impatience she senses when we talk can't possibly be anything she's doing.

I'm impatient because she is the world's worst listener. She listens to little and hears less. And she likes to talk to me in this tone of doubt almost to the point of indignation. She just can't believe all this chemo they want me to do. Literally. She refuses to believe it. Like I'm doing it for the fucking hell of it.

I wonder: when she talks to her friend or her sister (other people in her life who have cancer), does this fly? Maybe when she says "But why do they want you to do all this chemo?" in that tone, they answer with equal indignation: "I don't know!" Instead of perplexedly stating the obvious: so I don't die.

I am happy to offer that answer (and did), but I don't even understand what could bring someone to ask the question. Why do you think cancer doctors prescribe chemo? I mean if you had to guess.

Then she poo-poo'ed the idea of me taking would could be an equally life-saving medication. Like I was being duped into becoming someone's science experiment. TOO LATE, YOU RETARD.

To read this blog must make it seem like the whole world is soooo bad at relating to me now that I have cancer. That's totally untrue. It's just a shitty situation, being treated differently and being forced to live under cancer's rules. Some people in my life are naturally more intuitive about my needs, and more patient with situations that are unpleasant or unpredictable.

 My parents aren't failing in the "Can we come visit you?," "Call us if you ever need a ride anywhere" or "Let us know if you need money" departments. They just had 18 years to make me like them enough to want them around, doing those things, and they biffed it.

My brother's not much better. He really wants to spend time with me, he says. "We can take a day off work and go out on the town and have an adventure. Trust me, it will be so much fun." Does he put that kind of pressure on all his outings? Or does he roll that out just for siblings with cancer who can neither go on carefree adventures nor take any more time off work?

But it was cathartic to blow up, I guess. "Corrective" has also been suggested. With people like that, what else can you do but blow them off or tell them to shut up?

I Don't Know What to Say

Recently I've been wondering if maybe I am not forceful enough in my invitations. For example if people suggest visiting me at the hospital or at home after chemo, and I say "that might be good, but I might not be the best company, I'm not sure when is a good time, I can't go out or drink or do anything fun" -- this sounds like some kind of deflection. Like I'm really saying: Back off. Don't intrude on my cancer life.

People don't always know what to say to someone in my situation. They remind me how lucky I am and tell me they know I will be ok. Since the clean PET, some people have even assumed I'm doing great. "You must be so happy." How can they know I'm in the worst of it?

But it shouldn't be so hard to figure out that someone in my situation knows what to say even less. You can't find the right response to suffering, so how should I? I'm just making up this dealing with cancer shit as I go. I know what to say about it even less.

To the point where it's a quandary every time someone asks "How are you doing?"

And they should ask. YOU SHOULD ASK. I just have to figure out how much honesty and detail go into the answer every individual time, on a case by case basis. Repeat the litany of symptoms, side effects and experiences. Answer complicated medical questions. It's exhausting. And I am fresh out of energy for things. (Like refilling my water glass, or fetching a pen. Anemia's a bitch.)

I want to wear a sign that says "Ask me how I'm doing if you like bad news."

Scenario: I call you up and say "What are you doing Friday? Let's hang out." You say sure. Friday rolls around. Surprise! I feel like shit. I call you up and say "Never mind, if you show up I will barf on your face." That's what's going to happen sometimes if you plan in advance with a person who has cancer.

Alternately: I call you up and say "What are you doing right now?" You say "stuff." Welp, guess you're not coming over then.

Or you say "nothing." I make the following sweet pitch: "Want to come to my small, messy apartment and listen to me bitch about my life? Caveat: I might lose my shit."

It's hard to ask people to give up doing something fun to make them commiserate with you. You start to figure "if so-and-so wanted to spend some time bored on my sofa, he'd do it already" -- even though I can rationally ask myself: why would anyone come over uninvited? Or if I make it sound like it's a terrible idea?

When things get shitty, I don't think it matters much what people say. What people do is more important anyway.

I Don't Know What to Say (Prologue)

Title of blog post = title of cancer memoir!

Damn, I had the funniest cancer memoir title but I forgot it. Oh well, I thought up another one, it's all good. Better than My Staycation in Hell. I will post other ones in the comments if I think of them. Your suggestions are appreciated!

I totally wrote a couple posts ago (albeit a few months ago) that the plan was ICE chemo until clean PET, then superchemo. But I never blogged about getting that clean PET. Oh well. I got sick of itemizing cancer facts to the point that I didn't even use this outlet to celebrate that win.

Maybe because things are currently the hardest they've ever been and getting worse. I'm anemic to the point that it winds me to walk around the apartment. I don't get out of breath often since I am in exactly the shape I need to be in for my lifestyle. It is disconcerting to be so weak. And neutrapenia continues to shit all over my social life. (Not to mention we have these cherries in the fridge that look so damn delicious.)

Oh, and I'm going absolutely out of my mind. But I think that's a topic for the real post, not the prologue.

Later

Oh no! This was what I was afraid of. This isn't a blog, it's a pity party!

No wonder I've stopped writing in it. I've been pretty avoidant of lots of stuff: paying bills, cleaning the things, real life.

But I avoid writing like the devil. It's literally the worst. This must be why all the writers always compare writing to bleeding and crying.

Well. I stabbed myself twice today. With actual needles! And a little actual blood. Then I ate a brownie (I'm getting really good at making brownies) and thought about all the things I could write. Like poems, and stories, and blog posts.

Maybe later I will write some things.

Superchemo

ICE chemo until my PET scan is clean: that's the plan.

But the incidence of Hodgkin's returning under my circumstances is uncomfortably high. However, there is a procedure that minimizes the return rate significantly: a megadose of chemo to more or less wipe out my entire immune system.

To shorten the recovery time of such a procedure, I will first lie in a bed for five hours while my blood is cycled out of my body and then back in. The plan is to harvest blood stem cells, which are made in the marrow and need to be tricked out with a series of shots.

Blood stem cells are more differentiated than the controversial embryonic stem cells you hear about.

My stem cells will be given back to me after superchemo to aid recovery. Still, there will be serious side effects and a longer period of neutropenia. I will be hospitalized for about a month.

If all goes well, this goes down mid-late August. It's important to have something to look forward to. Since Supervacation was a bust, this is what 2012 has to offer instead.

Neutropenia

You get to feel like your luck is pretty bad.

Seriously. When some doctor tells you "you've got cancer," it's pretty hard not to feel unlucky. I know plenty of 30-somethings who don't have cancer, why the fuck should I? Hell I know lots of 50-somethings who have lived cancer free lives, so I must not have the greatest luck to be where I am.

I've written before about how cancer lowers your expectations, redefines normal and adjusts all the scales. Everything becomes relative to the big C. Like how "lucky" I am to have Hodgkin's and not some inoperable, fatal spine tumor or something.

But even within the relative luck of Hodgkin's, the not serious cancer, things are pretty unlucky and serious.

ICE chemo does not discriminate between good cells and cancer cells, so it hits your blood counts hard. Patients often enter a state called neutropenia; a neutropenic person lacks white blood cells, most importantly a kind of white blood cell called neutrophils, which fight infection. This does not necessarily happen to everyone, but it definitely happened to me. I had to give myself a shot (a cancer first) to minimize the window of neutropenic time.

Many neutropenic patients go about their lives just fine until their counts recover. Avoiding bacteria and disease is key. This is of course not 100% possible since bacteria live everywhere. Neutropenia is like taking off your armor in battle and relying on the other guys to miss. It's a game for luckier folks than I.

A week ago I ran a fever that spiked at 101.5. In my state, there was no way to avoid being hospitalized, pumped full of broad-spectrum antibiotics, and put into a bubble until my counts recovered. (OK, it's not a literal bubble, just a room I can't leave.)

Finally decide to take some vacation time and I spend half of it in the hospital knowing I'll be back Independence Day for more chemo. And this round will crush my cells, so I could just be trapped in this cycle until superchemo. An infection this time does not mean there will be another one later.

You know, if I'm lucky.

Thrown

The summer of 2002. I had just stumbled out of my sophomore year at UMass and I'd never felt emptier.

I kept trying to piece together that most ultimate of phenomenological questions: How did I get here? Heidegger has a concept that translates to something like "thrownness" to describe the relationship of the subject to time. How we are thrown into the present moment, and while it is the very nature of, the essence of consciousness to provide an answer to the question, to construct our world not just in space but in time, in narrative, when we try to suspend those processes we begin to experience not the constructed, floating opera but the raw opening into life that the present really is.

Mostly then I was wondering: who was that guy? Walking the Longfellow Bridge over the Charles River, heading to Mass General to get some tests done, listening to Tori Amos on my discman (it was 2002, remember), she was singing "This is not, this is not really happening. You bet your life it is. You bet your life." Those were the two strongest sentiments I had about the situation I was in: this is not happening, and you bet your life.

Today, there's no escaping that this is really happening. There's no narrative, just, like Bishop says, "everything connected by 'and' and 'and.'" This is the now I've been thrown in and there's only so much strength the past has to offer.

Back then, my doctrine of "wait and see" had ceased to be a mantra for remaining open to life. It had become an excuse not to change. I didn't much like myself and I was scared of being alone. Any situation that made me feel more interesting or brought some company into my life I would not reject. "Wait and see" had become a way to let wounds fester, not to lift a finger to stop myself and others from getting hurt. A way to take stupid risks under the guise of playing it safe.

I find myself thinking of that guy today as I cross the same bridge back to the same hospital, no longer the scary mass of unknown and alien sickness it was then, but an even bigger monster that has swallowed me. I have to make a home in the belly of this beast, avoid false hopes as readily as despair, and keep telling myself "wait and see, wait and see."

ICE

So by now I've probably told most of you the bad news, but here's the skinny:

My PET scan showed uptake in some lymph nodes along my ribcage just under the field of radiation. The cancer they blasted with radiation is gone, but some sneaky bastard cancer has cropped up where they didn't radiate at all.

Ordinarily they would biopsy to confirm that it's Hodgkin's even though it's pretty obviously Hodgkin's, but this cancer is in a bad spot under my ribs and close to my heart. The surgery is riskier than it's worth, so in true House style we skip straight to treatment, which means back to chemo.

The bitch of it is -- yes, that's actually NOT THE BITCH OF IT yet -- this new chemo, ICE, is even more nasty than ABVD, and because they want to infuse it very slowly, they are actually hospitalizing me for three days to get it done.

I'll be at MGH Wed-Fri if you want to come visit. I promise to have my ass hanging out of a hospital gown.

My oncologist says I have to do this at least three times, spaced about three weeks apart.

You know, I have all these things I've been waiting to do -- waiting to feel better, waiting to be healthy. It occurs to me now that I should do as many of them as I can, quickly. There might be a bigger lesson there but I'm choosing to ignore it.

June 6th

I won't know anything until June 6th.

I do a PET scan on the 4th and then that's when I get the results. That has been the case since the day I walked out of my last radiation treatment. I won't know anything until June 6th.

If you think all this waiting around, wondering how shitty my future might be has worn on me, yea it has. I am fucking tired of it and my main emotional response has been anger.

Most of that anger has come out at work. Well, rephrase: most of that anger has been oriented towards work. I have been EXCEPTIONALLY AWESOME at not walking out and being like "Fuck you clowns" even though I have wanted to really bad like every day for a month and a half.

Something about being dealt a shitty hand... just makes my tolerance for bullshit go way down. This is what I've been working so hard for all my life? To slave away for shit pay at a dead end job and have everyone think I'm not good enough at it? But be too passive-aggressive to tell me because they don't want to shit on the guy who has cancer?

Anyway, I won't know anything until June 6th. But how do you feel Scott? Other than the fact that my first symptom (pain when I drink alcohol) has more or less returned, I feel fine, just fine. And that's what I tell people: I feel pretty good.

Well, that's a good sign right? I won't know anything until June 6th.

There are bad signs, and there is the absence of bad signs. Cancer doesn't have good signs.

I WON'T KNOW ANYTHING UNTIL JUNE 6TH.

100%: The Waiting is the Hardest Part

Actually, the chemo is the hardest part.

Plus, if I know my body, my luck, if there's more bad that's gonna happen, I won't have to wait for it too long.

Until then I am done and planning to not have cancer again any time soon.

90%: Eating Junk and Getting Drunk

I am drinking again and it is glorious.

A little dangerous, really, since I have a thirst to begin with and now I am making up for lost time. Everyone is very supportive of me stuffing my face with whatever I come across since 137 is not enough pounds for me to be. But is it also cool if I just get wasted every day for the next month?

Plenty of calories in beer.

Really, I am very conflicted and it's going to be a weird transition. First off the degree to which I missed drinking is a clear sign of a problem. It can't be healthy. Plus every time I've opened a beer in the last week (I had at least one Friday through Monday) I've thought "Is this a bad call? I still have cancer, maybe." I have weird, new guilt about things I used to do without much thought.

I mean what is the relationship between alcohol and my cancer? Alcohol definitely made me more symptomatic in the beginning -- made me feel worse. It seemed like alcohol + cancer was bad.

It all just goes back to not knowing where this cancer came from. If I go back to all the same old habits, eating junk and getting drunk, exercising practically never, will I just get cancer again? Did anything that I did or didn't do even have anything to do with my getting cancer in the first place? No one really knows.

It's one of those "if you don't change your direction, you will end up where you're headed" things. I don't want to get more cancer, if it's at all avoidable. I would like to work on healthier habits. But I don't want to feel anxious and guilty every time I indulge.

I'm not cool with living in fear that the cancer's coming back or believing deep down that getting cancer is somehow all my fault.

80%: The Nod

One time I was at chemo, I think just before it started turning to all kinds of shit, and I remember there was this other guy there getting started around the same time I was. None of my meds had come in from the pharmacy, so I was sneaking off to the bathroom to pee before the act became a dance with my -- what the fuck do you call those? -- stupid wheelie thing that is connected to all the tubes and machinery that I am plugged into.

Maybe I have the chrono wrong. Maybe I was on my way to puke. I'm already trying to blur out that whole phase of my life and apparently I am having some success.

Anyway, so I'm walking by this guy. He was like Skyping with someone in French on his laptop or something. Like how I was often watching HBO on my iPad or getting work done with it or reading on my Kindle or watching X-Files on the TV/DVD combo provided or some other awesome high tech convenience that makes chemo sound like riding on a train or sitting at a cafe.

It's not like in 50/50 where you sit next to two awesome old dudes who give you pot cookies. Not in my experience anyway. Not at MGH. People mostly go with loved ones and sometimes you wind up chatting with the people around you, but it's fleeting and more Tyler Durdenesque. Single serving friends, even the Mona Lisa is falling apart.

But this guy looked up and gave me a curt nod, which I returned.

That was when I realized I was a part of something now, a community of people with this absurd bond. It's hard to put into words, but it fits nicely into nods. The nod says something like "Yup, this sucks. Don't go dying or anything." And you don't have a clue who that guy is, but you feel the exact same way about him.

You meet people who had your cancer that you would otherwise have nothing in common with, no reason to think of them as more than an acquaintance or co-worker. But there it is, the cancer connection, running on a deeper level than you can process, almost unwanted.

At some point, maybe soon, if I'm lucky, the phrase "cancer survivor" will apply to me, will be a legitimate way I can describe myself.

60%: Readiness

What can I do except try to be ready for the next challenge that is steadily approaching?
If there's anything that suffering has taught me, it is that there will always be more of it. And how can we get ready? Can we get ready?
We have to believe that when it comes, we will find the strength to weather it within. But it's not something we can know, and I'm not sure it's something for which we can really prepare.
Is the best thing not to think about it? Worry won't make me more ready, will it?

55%: The Resentment Post

I have some Cancer Feelings that aren't great. Not sure what to do about them. In 50/50, Joseph Gordon-Levett just yells really loud at one point, but I think in real life you write a long nasty post in your blog about it.

I'd like it all to be gratitude and empowerment. But sometimes I just want a foot rub to distract me from the throat pain in the same INSTANT that I want my girlfriend to stop acting like I'm a big baby and she needs to take care of me 100% of the time. I can go to the hospital by myself. I can handle my ailments. I don't know why I am projecting all that crap onto her just because she is always so ready to help. She's not trying to make me feel bad at all. But if I start to feel better, then I have to be a regularly contributing human in our domestic and interpersonal dynamic, and not The Sick One, and I'm not entirely ready for that.

Readiness is a sore spot right now. Everyone's being really positive about how I'm just blowing through radiation treatments. If I hear the phrase "home stretch" one more time I am going to lose it. You can't just fast forward to the part where I feel better with stupid expressions. I am in treatment with worsening symptoms and there will be a recovery period of weeks, maybe months. I carry around unpleasant sensations all day (including my awful shin splints -- not a cancer thing, but I can barely walk, it is ridiculous) so don't expect me to bound into the room and talk about cancer like it is already in the past.

And I hate it when people tell me what's going on in their life and then have to add "Obviously it's not as bad as cancer." Deal with your guilt better. I'm here to listen to you tell me about your life. Do you think I am keeping a secret suffering tally in which I am always winning? Sort of assumes I am a douchebag, if my actual thought in that moment is "Jeez, this guy with his bad day at work. Doesn't he know I have cancer?" We both know cancer basically beats traffic jam. That doesn't mean I am incapable of sympathizing with how obnoxious all those bad drivers are. Plus, everything is relative. Everyone has their shit. When I am done having cancer I will still have problems and how much relief will I really even be able to give myself by thinking "at least I no longer have cancer"?

I know people are tired of hearing about cancer. Tired of not knowing what to say, mostly, which I am also resentful about. Just say "That sucks" every so often SO THAT I KNOW YOU ARE STILL LISTENING. It's not too much to ask and it really isn't that hard. No one expects you to say something deep that heals my soul. The whole "it's so overwhelming, I don't even know what to say" response is such a cop out.

In fact, here's a response to one of my recent email whines about people being vapidly religious and positive at me. To show you how it is done:

"I have trouble being positive about most things, so I can only imagine my cynicism if I got dealt the cancer card. I would be weirded out and think you were actually dying if you became zen-like and cheery. And between you and me, I think most people who find solace in god can't be thinking all that hard."

It was good to hear these thoughts and I am glad for the friend that shared them with me. See how when she tried to put herself in my shoes I wasn't like "WHAT YOU COULD NEVER UNDERSTAND." That is the opposite reaction of how I feel. I appreciate people using their imagination to consider what I am going through. And I definitely appreciate someone saying "That sounds like bollocks" way more than "Hey, I wanted you to know, I am reading your blog, but I just never know what to say, you know? So just like know, that I am reading it."

50%: The Trade Off

So I am half done with my radiation treatments, and this week I have not had any explosions of crazy lymph node pain. It seems safe-ish to assume that I'm through that phase and now just need to worry about the stuff I was told to expect, which has definitely started.

I have a ring of red skin around my shoulders. I am lotioning often. It is odd.

My throat is sort of sore all of the time. I bought lots of various lozenges and candies.

I'm not sure what's going on with food -- on the way down it often encounters resistance, but not like constricted esophagus resistance. Not just like the tube is swollen and smaller. It's like my stomach says "Nope" and sends up a fleet of burps. I dunno, eating sort of hurts.

Which is funny, because I am doing an awful lot of it. I am not worried about putting those lost pounds back on. I've missed food and I am making up for lost time.

I am a little concerned by last night's "sleep." I had the sweats a bit, not sure what that means. And I had to get up to pee urgently two times in the middle of the night despite emptying the tank before bed and again when I got up in the AM. Seriously I'm talking 4 major pees in under 7 hours. Where's all that liquid coming from? Cancer's doing something nefarious, I just know it. Melting away, I hope.

For feeling as crappy as I do, I am doing really good. That's relativity for you.

40%: Night of One Act Plays

At 5am my crazy sleep (a three hour nap yesterday despite a mega steroid dose that should have sent me churning around the apartment; falling asleep for the night despite the nap by 10:30 which is a record for me under normal circumstances) caught up to me. The warning on the bottle says side effect: insomnia. This isn't what they meant, I think, but it's close enough. The alarm goes off in an hour, three hours too damn early if you ask me, but I am already lying awake and I can feel there's no hope of any more sleep before I start this day.

This week. A radiation dose first thing, and then back to playing at real life, waiting for the other shoe to drop. Will it be enough, as the week progresses, the radiation? To keep this awful last ditch attempt at bay of my bastard cancer to cause me misery?

Something strange happens while I'm lying there though. My thoughts open up and take a shape: the night of one act plays my school put on in 10th grade. Caught up in my memories of this night are a handful of the narrative elements that propelled me through that year. My hopelessly unrequited amour for my best friend's girlfriend, for one, who shot me in the heart that night with an a cappella song inspired by a rape. And the play I had tried to direct, a visualization of a poem I didn't like or understand, which I had been talked into by one of the few people at that place who could make me feel intellectually insecure. I suffered from a dearth of good ideas or interested actors, so I abandoned the piece, only to watch it be put on (much to my surprise) under the assumed leadership of the head actress, who I rather despised and who had missed several key rehearsals.

The coup was mainly an annoyance. I was glad to have my name detached from the project. I got a lot more ambivalent about theater that night, thinking how collaborative it's supposed to be and seeing what happens when you lack strong creative direction. I was starting to get that I was a writer only, though it would talk similarly disastrous forays into TV production to bring the point home. Any project I worked on, it was like either I had to tell everyone what to do and they resented it, or I had nothing to say so nothing happened. Writing is between me and the page; it's just a safer gambit. I only ever let down myself.

It was strange and familiar to lie awake like this, my past opening up to put on a little show. I'm usually quite the dweller on things, and have wrecked many a good night agonizing over much best left untouched. Now that time has passed, though, a harmless reverie to pass the time, reconnect some neurons and remember where I came from -- it was welcome. What was so odd about it is that I feel like it hasn't happened in so long that I'd just stopped being that person. For months, waking up in the middle of any part of the day or night, my thoughts have run first and last to my stomach, my lymph nodes, my dripping sweat or at least my hair, which nightly migrates from my head to my face.

The extra challenges of what my body puts me through during the day and the extra anxiety about where it's all going, when it's ever going to end, if I'll ever feel normal again... that's the new normal I've long since adapted to. I don't let my thoughts run much farther back than October and it's impossible to focus them past the next few days. Mostly I just consider what happened in a TV show I watched recently while I take some more Ativan. Even the books I started when the chemo first began to wore off have been left largely untouched.

Everything is cancer, everything else is on hold, except for half an hour this morning when I should have been asleep and for whatever reason, I went back into the past and for a time remembered that I used to be something else.

35%

The good news is that my doctor tells me my suffering is not predictive. It's not common or expected but it's not a sign of something failing. There's no reason to believe my radiation is or will be less successful. We may still be on track for a cancer free summer.

And now there is sort of a plan for when the Dexamethason runs out on Monday -- if the inflammation, pain, and fevers return next week, we will go back to the prednisone on a tapering schedule. So start with a mega dose on day 1, then less the next day, and so on, to try to limit the side effects and dependency issues of the drug.

The bad news is that I already have thrush, or what I am calling Athlete's Mouth. Yes, it is that gross. I scraped a bunch of fungus off the back of my tongue already. This was definitely an oversight on their part -- that anti-fungal regimen should have been prescribed a week ago. But I guess there's no sense complaining. At least I'm not in pain. I'm still breathing. I'll get plenty mad at everybody if the cancer doesn't go away. Trust me. Then there'll be so much rage to go around, I won't be tolerable to anybody, medical practitioner or layperson, friend or stranger.

But tonight could be a start. I can't drink. Or smoke. It's Friday night and short of abusing all the oxy I'll probably need, I've got nothing to do with all this steroid crazy except watch Star Trek reruns and see how much of my dismal attitude Kathryn can take before she starts to cry. I am a danger to myself and others.

I've tried not to say this so many times, because admitting it seems like a weakness, or giving away my secret problem, and saying it only makes it worse, but god, sweet sweet Jesus, I NEED A DRINK. So damn bad, just to pour a whiskey, pound a beer. To mix the gin and sink into oblivion.

30%

I'm back on steroids. Not prednisone, but one I took pre-chemo called Dexamethason. I think it makes me crazier and upsets my stomach more. Apparently these things support adrenal production but my body can become super dependent on them so that it can't produce the stuff on its own. Which is why this treatment is only for another 4 days. Where do we go after that? Back to being an oxy junkie? Weird that medically that is the preferred option.

And get this: it's a 40mg dose, but the pharmacy only had 4mg pills. So I have to take 10 pills at once. And with it the docs have prescribed this weird yellow liquid I need to swish and swallow 4 times a day to prevent thrush, which is a yeast infection IN YOUR MOUTH. Don't even Wikipedia it, the pictures will make you hurl.

None of this -- the pain, the inflammation, the return of cancer symptoms, the need for steroids -- was discussed before I started radiation. I was basically told I would feel better as the chemo wore off and that I should worry about some dry skin and a sensitive throat. Good thing I am seeing all my doctors today, because I definitely need to have a better sense of what the fuck is going on, and to ask the most pressing question: does all this mean my radiation treatments are less likely to cure my cancer?

I want everybody just to know so that you know that my hair is still falling out. I now wear a hat pretty much 100% of the time. I lost 5 more pounds in the last 2 days. Can't beat the cancer diet. I really do look like a sad, sick version of myself.

20%

A new development: what opportunistic, chemo-resistant, bastard cancer still left hanging on (in the original sites, lymph nodes at the base of my neck on either side) is trying its damnedest to grow. The nodes themselves are swelling, which causes extreme pain, and has brought back the passing fevers and emptying sweats I suffered from in the beginning.

My doctors gave me prednisone, a steroid, to fight the inflammation, and it worked wonders. Then they stopped. They say the radiation itself will clear this problem up, especially now that I've started going every day. And while I am managing those daily visits like a non-barfy champ, they've offered me no relief from the extreme pain I am in except more and more oxycodone, and time.

What I hate most is narrating medical developments. There aren't supposed to BE any more developments. Just 5 minutes a day, zap under the mask, and all this madness ends. I'm zonked on painkillers and still in pain. I'm not eating or sleeping well when I'm supposed to be on the mend.

Why won't this shit just end already?

Chemo is Over

Big cancer news everybody: I still have cancer.

Here's the scoop: my last PET/CT still showed uptake. In other words, the radioactive sugar that the cancer eats (thus lighting it up on the scan) is still being picked up in enlarged lymph nodes near my neck.

My doctor says that these sites are where the cancer started and they are resistant to chemo. This places me in a minority group of people with Hodgkin's lymphoma for whom ABVD chemo doesn't just melt all the lymphoma away. So I am done with chemo for now and maybe forever! Huzzah! (See how that good news is, like all of my good news, wrapped in bad news? Uncertain news at least. Like instead of a bacon wrapped scallop, imagine the bacon itself is wrapped in some kind of weird smelling fish.)

The positive spin is that radiation (which I start soon -- preliminary meeting is tomorrow) is still highly likely to knock the rest of the cancer out while being much less shitty to my body. My prognosis is still good.

Unless I'm in an even smaller minority of people with lymphoma for whom both these treatments are not successful, but why would I ever expect that to happen?

I can't do a follow-up PET/CT until 4-6 weeks after radiation treatment has ended. The treatment is every day for a month, starting next weekish. So I won't know if it worked until... June sometime? If I still have cancer then, I will need to restart an even rougher chemo, and I think I might lose my job at that point. FMLA only covers you for so long. Not sure what happens to my insurance if that happens. Let's cross those bridges when we never get there, thanks.

My doctor has confirmed that my "anticipatory nausea" hospital response (I puked when I went for my PET scan, so it's officially bad news) is Pavlovian and can be reduced with drugs (Ativan really doesn't seem to be helping) and maybe Cognitive Behavioral Therapy (CBT). The problem is not strictly psychological; my body needs to be trained to disassociate the hospital from the poison I got there.

CBT would mean probably exposure therapy: engage with the stimulus over and over (the hospital) separate from the associated condition (chemo sickness) until the connection between the two has become unlearned. This is basically my radiation treatment plan. I mean I *have* to go to the hospital every day for a month. So eventually I will break the conditioning as my body realizes that it is no longer being poisoned every time I go to MGH.

Or, you know, I will puke every day for a month. Whichever.

Since the advent of good, modern anti-nausea meds, this kind of conditioned reaction is very, very rare by the way. Only a small percentage of cancer patients have this problem anywhere near this severity.

Sometimes it sort of feels like the odds are against me by virtue of being in my favor.

Anticipatory

Haven't posted in a while because what I have to post about is mondo depressing.

Mondo? Anyway.

Round 7 of chemo had an interesting surprise: apparently round 6's fun bout of puke-iness was not an isolated incident! Despite seeming to be triggered by a legitimate stomach issue, the phenomenon was repeated last week, minus the eating of expired foods.

It seems now, when I enter the infusion ward, I throw up. Before I get the chemo infusion that makes me feel like shit for what used to be days and is now pretty much permanent. My body basically just says NOOOOOOOOOO which makes sense, it can't be expected to understand that without poison it will die.

I'm told I can try to fight this by taking more Atavin, so ok, I will try. But chemo all in all is starting to kick my ass and I'm not super happy about it!

Here's the good news: based on the results of my next PET/CT (to be conducted after my next round of chemo) I might be switching from chemo to radiation, which I'm told has less in terms of short term side effects.

I mean, sure, it comes with the risk of lung cancer in 15-20 years, but pumping more chemo drugs in my body increases my risk of leukemia in that same time span since we currently have no cure for cancer THAT DOES NOT CAUSE CANCER. So it's kind of 6 of one, half dozen of the other.

That means my next round of chemo could be my last. And the decision is up to me, really. If the scan shows some cancer still, the recommendation is radiation. If it's clean, I can sort of call it like I feel it, and I think I am done with chemo.

Radiation will be every day for a month. And that is cause for celebration. Gives you a sense of where I'm at these days.

In other news, pain makes it hard for me to fall asleep, but apparently so does Oxycodone.

Not Entirely Cancer's Fault I GUESS

Now that I've got all my disorganized miserable thoughts out, I guess I'm ready to look at my situation more level-headedly:

1. I'M TIRED. Worrying about cancer, all the shit my body is going through... It's a full time job and I've had no days off. That has not put me in a good place.

2. When I talk about my whole life being shitty I really just mean my inability to imagine a future in which I feel fulfilled by my career in any way. I have worked for a decade towards a goal I no longer believe is achievable. Even if that goal is no longer achievable because of choices I have made, that still counts. It still disappoints. And I have no back up plan. I find that panic worthy. Even if I focus on those other parts of my life that are going well like my awesome girlfriend that I'm totally going to put babies in some day, I realize that in that future I am still too poor to raise a family. What I'm saying is I need to get back to the projects that keep me sane. Cancer has derailed that and makes it harder to get back but if I don't work on some poems and read some lit crit or practice French or dabble on a screenplay or SOMETHING I am going to lose my mind. I should probably think about mobilizing a search for a new job once I get better, too.

3. I need to do more things for me and feel less guilty about it. Specifically, I am declaring myself done feeling bad that people in the office have to work harder if I am there less or less efficient when I'm there. That's not my problem. I didn't choose to get cancer and days off come with the cancer territory. Like the one I took today. The thing about sick days when you have cancer is that they are always really sick days. I don't even care that I'm making less money. In fact, I am planning a leave of absence that will even further damage my wallet while putting more strain on the office! Because it's what I need.

4. I like to push my body with my bad habits because I don't want to let cancer win, but clearly I need to hydrate more and exercise. I joined a getfit program through work where I log my exercise minutes and my co-workers do too, so hopefully the mutual encouragement should help motivate me.

I don't know if being level-headed and itemizing my problems has helped at all. It definitely did not cure my cancer! But it makes me feel more like I have a plan and am taking steps to get to a better place, which is clearly what I need. Without a plan I just dissolve into miserable shit and that is no fun for anybody.

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.

CANCER CANCER 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.

Half-Way

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.

Breaking News, Guys

Yeaaap. Still have cancer.

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.

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.

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.

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.