Giant Robot Slippers!

ThinkGeek: Giant Robot Slippers!

Happy Cancerversay!

Two years ago yesterday, they pried open my chest with a ribspreader and hacksaw and dragged the little sucker (hopefully screaming) into the daylight. 

Since then, every three months I go in for blood work and x-rays or a CT-scan. Then about a week later I get a quick exam by a nurse followed by a consult with Dr. Robyn where she tells me that the blood work is clear, the scan looks good then we talk about our dogs for ten minutes. I think they like seeing me because when you work in oncology it must be nice to give good news.

That doesn’t mean that every time I sit in that exam room waiting for the nurse, that I’m not just little bit terrified.

But it’s now officially two years since the surgery and as a reward; I only have to get the scans and blood drawn twice a year. I’m still technically a patient for the next three years, but I guess I can call myself a survivor now.

On my last visit, Doctor Robyn also gave me a present, a disc containing one of my CT scans from back in 2012. This is a top down view of my chest; the white notch at the bottom center is my spine. The white lumpy thing in the center is my heart, the grey mass attached to it...

...is not. 

In the movies and in books, people who have lived through this sort of thing always seem to have gained some profound insight into life. I wonder if that is true.

The physical changes are obvious. My hair came back a lot thinner for one. My hands are stiff and I have to wear gloves if the temperature drops below ten degrees centigrade (you don't want to know what it did to my already atrocious). I can’t tell if my feet are getting better or I’m just getting use it, but the idea of walking barefoot on a hard floor is akin to the idea of walking across a bed of hot coals. I’ll do it, but I’m going to do it in a hurry. Unfortunately, my attempts to wean off the pills always end in a week after I’ve been reduced to a twitching, limping, hunched-over mess.

I am feeling better enough to try to get back into regular Aikido. I am happy to announce that I can still take a fall, but I swear that that the last kotegashi (wrist-throw) shifted one of the wires holding my chest together.

I can feel those, btw. There is a nub sticking up just below the suprasternal notch (that dip at the base of your neck where the collarbones meet), and sometimes when I’ve been sitting hunched over for too long, there is a sensation like a popped knee or elbow when I stand up.

But do I have any great insights into the human condition? No more than anyone else accumulates as they go through life. Some things I’ve always believed were reinforced, while a lot of other things don’t seem as important anymore. 

One thing I will stress ... hold on to your friends and family as hard as you can. We’re all going to go through this in one form or another and there was nothing more heartbreaking than seeing those who have to go through it alone. 

Hospital Survival Tips

A friend of mine went through a difficult operation yesterday (successfully, by all reports!). To help her out, I wrote down some Hospital Survival Tips. I thought I'd post them here in case anyone else needed them.

1) Items you must pack: A padlock, comfy & warm jammies, an extra blanket, warm socks, slippers, a tooth-brush, toothpaste and floss, and most importantly .. this cannot be stressed enough ... quality tp.

2) Supply lines are critical. You will need a steady supply of laundry, rides and meals. Someone to go out and scrounge up local take-out menus is also a plus.

3) Just because you picked it from the menu doesn't mean that you will get it. Beware Fish Fridays! 

You will come to dread this sight...

4) On your first day, act crazy then pick up a chair and beat the hell out of the biggest person you can find. That way, no one will mess with you.

5) The TV and phone service are scams. Find a wifi connection asap and remember to bring your cell-phone charger.

6) Despite the joy and happy purple kittens that it brings, pain killers also bring dyschezia. Fibre is your friend.

7) They have drugs for almost everything; Do not be afraid to ask. While this might seem facetious, they cured my hiccups.

8) Hording is key. If they will give you extra of ANYTHING, take it.

9) Suck up to the Chaplin. He can get you discounts on parking.

10) Roomates are a blessing or a curse. Your best bets are coma patients or people whose spouses like to bake. In the event of an overly Chatty-Cathys or the late night flatulents/nurse callers, try slipping a few random meds into their breakfast. If nothing else, the side-effects might provide some entertainment.

11) Sleep when you can. Nurses' shifts start early and the bloodsuckers and orderlies start even earlier. Between that, bed checks and midnight meds and tests, I usually got my best sleep after morning rounds. They usually leave you alone for a while after that.

12) Make sure that the guy giving you that exam is a qualified medical professional and not someone who just wandered down from the psych floor. Boy, did I learn that one the hard way.

A Cancer Reader

Our Cancer Year

The godfather of indie-comics, Harvey Peckar and his wife Joyce Brabner, write about the year Harvey found a lump in his groin in this Harvey Award winning graphic novel.

This book begins as a reminder that almost everyone’s life will be touched by cancer at some point. Just after his lymphoma diagnosis and up to his surgery, Harvey and Joyce are constantly talking to people, sometimes close friends who, almost shyly, begin to talk about the loss of their partner or their parents or even their own ordeals.

The book begins with Joyce’s involvement with a youth group for teens from trouble spots around the globe, which seems a bit extraneous at first, but begins to pay off throughout the novel.

After his surgery, Harvey begins a brutal chemo and radiation regiment that in addition to the all the standard joys of chemotherapy, leaves him covered in weeping sores, severly disoriented and in screaming agony. 

As Harvey becomes weaker and more difficult to care for, the book comes back around to Joyce and the meaning of ‘Our Cancer’. At first the couple tries desperately to maintain a normal life; they had bought a fixer-upper home almost immediately before Harvey is diagnosed, Joyce has a visit to Israel already planned and Harvey tries to keep working through the chemo, but they are both forced repeatedly, sometimes violently, to come to terms with the realities of cancer. For Harvey, it is the toll that the chemo takes on his body and mind. For Joyce, that means watching as her husband degrades into this helpless, toxic, desperate, sick and disgusting thing as she is forced to care for him and deal with all the details of regular life. It is clear that she is determined, but she is also frightened and scared to show any weakness in front of her husband. She makes mistakes; she gets angry and frustrated and she sometimes takes it out on Harvey. In short, she is a kind and good human being doing the best that anyone could under the circumstances.

It is Joyce’s experiences, with Harvey and with the people around the couple who help out in ways that range from tiny to massive, that show how a disease as deeply personal as cancer can, if you are really lucky, become “Our Cancer”.

For more about Harvey and Joyce, there is an excellent and funny movie about their lives called, “American Splendor”.

The Fault in Our Stars

A coming of age novel about a girl who has battled her whole life against cancer. This book is pure fiction, but it skillfully blends the frustrations of growing up, with the frustrations of being sick. It is in a lot of critic’s top-ten lists at the moment for good reason, though I found it read a little too much like a movie script in parts.

Read it and tell me that the part of author Peter van Houten wasn’t tailor made for Jim Broadbent.

The Emperor of All Maladies: The Biography of Cancer

The best layman’s guide to cancer and its place in history that you are going to find. Though it casts its net pretty wide, the historical approach really helps you put into figure out just what cancer is, what it is not, and its place in society over the past two hundred years or so (before that, not much is known).

And after reading about some previous kinds of treatments they did in the (not so recent) past, it also made me incredibly happy and relieved that I got sick in the 21^st Century.

Also smoking and tobacco? Though they only get a surprisingly short chapter here … SO MUCH FUCKING WORSE THAN YOU THINK.

The Immortal Life of Henrietta Lacks

Anyone who have ever cared about has been through a serious illness and is still alive today owes their life to Henrietta Lacks.

Mrs. Lacks was born and raised in Roanoke Virginia during the first half of the last century. In her early thirties she was diagnosed with cervical cancer and died in 1951, probably more from the treatments than the disease. But she left behind two samples of cells that were cultivated by her doctors that would go on to become the HeLa cell line, the first human cells that continued to grow and dived more than a few months beyond donation. There are HeLa cells still growing and thriving in labs all over the world today, used in thousands of different experiments.

This book is a history of Mrs. Lacks’s life, her family, her disease and her incredible gift to humanity. It also presents some troubling arguments about medical ethics as mega-labs make millions from discoveries made possible by those cells while her family continues to struggle in poverty and try to understand just what it means when they are told that a part of Henrietta is still alive.

                                            MOVIES

50/50

The screenplay was written by Will Reiser based on his own diagnoses and treatment of a sarcoma in his spine. Joseph Gordon-Levitt plays Adam, a young journalist who learns he has cancer, and Seth Rogan plays Kyle, Adam’s slacker buddy who almost imperceptivity shifts from being that goofy friend, to Adam’s primary support and caregiver.

While the bromance angle isn’t that applicable, there were some moments in this film that mirrored by own experiences so closely that I spent much of the movie bawling my eyes out.

It is also very funny.

Wit

2001 television movie based on 1998 Pulitzer Prize winning play of the same title by Margaret Edson. In it, a reclusive English professor discovers she has a virulent form of breast cancer. The play is about a lot of things, but it also about the costs of going through something like cancer alone (sort of an antithesis of ‘Out Cancer Year’). I saw a few people in this situation; mostly older people … words cannot describe how heartbreaking it is.

‘The Emperor of all Maladies’ talks about this period of time in treating breast cancer; it was a kind of ‘scored earth’ approach. It was brutal and unfortunately ultimately, ineffective.

While the movie (and I would assume the play) are hard to watch, the narrator’s titular Wit is what helps you get through it. At one point she describes herself as “published *and* perished”.

My Cancer Dog

When I first met my wife she warned me that she had dogs. No problem, I like animals. ..but I may have been too distracted to focus on the operative word, 'warn'.

Then I was introduced to Tasha and Nakita. My experience with pets up to this point had been a revolving door of disposable hamsters and a couple of chubby cats, and now I'm facing down two very big, very scary Huskies who are staring me down while trying to figure out exactly why this skinny little white boy was in their home.

I had to learn fast how to handle big dogs and made some very notable mistakes along the way, but I quickly came to love the both of them. Soon I wrestling them into snowbanks and had persuaded them, for the most part, not to feast upon my pale, soft flesh. Nakita was even the first dog to ever smile at me, which is a hard thing to describe unless you've seen it. 

Tasha died a month before my doctor noticed a problem on the x-ray and scheduled a biopsy. She was sixteen and it was simply her time. A fighter until the end it took four people and three muzzles to keep her from taking a chunk out of vet, all while under heavy sedation. Also, my wife wrecked the car that month. Suddenly our lives had become a country song.

By this time, Natika was pushing fourteen. A little grayer around the nose and definitely slowing down, but still going strong.

The hardest time of the whole cancer ordeal was those first few months. The first biopsy took place at the beginning of December, but came back inconclusive so they scheduled another one. It being the Holiday Season, that didn't happen until just after New Years. Then during the second procedure some idiot radiologist assistant offhandedly tells me, 'its probably lymphoma'. We were left with that dangling over our heads for a month until the beginning of February when I finally got to see an oncologist. I started chemotherapy the very next day.

Needless to say, January was pretty bleak, but I do have one good memory We live at the end of a cul-du-sac and beyond us is a sliver of woods that spreads out, leading down to a network of creeks. Those all eventually spill into a two small lakes, the closest of which with the imaginative name of, 'Second Lake'. Now in a straight line, Second Lake is maybe only a couple of miles from the house, but if you go down into the woods and follow the creeks it can take hours. There are lots of different trails, thickets for the dogs to crawl around in, even train tracks and a horse farm if you know where to look. Over the years, we spent hundreds of hours exploring down there. It gave the dogs a chance to be let off their leads to roam and run around. They got to chase squirrels, rabbits and deer, but the only animal they ever seemed to catch were porcupines. The one thing we could never seem to do was reach Second Lake.

One weekend that January it was nice and cold, with a fresh layer of snow on the ground. Nakita needed a good walk and I needed a distraction, so we set out with the express purpose of getting to Second Lake by going the long way. I think round trip took us close to five hours, but we did it.

During that hike, I spent a lot of time thinking about possibilities, procedures and prognosis, but right then, right there in those woods none of it mattered. Nothing was going to kill me in the next five hours, so I could concentrate on the walk, the snow the sun and Nakita.

I can't remember which one said it, but early on one nurse or another asked if we had pets. When I eagerly started talking about Nakita and the cats, grateful to be talking about anything else, she responded with, 'oh, you'll have to get rid of those. They'll bring infections into the house.”

I'd seen similar statements in the occasional pamphlets and literature I'd read, but bless them all, none of the other nurses or doctors ever brought it up, even after I did get a couple of bad fevers. There are certainly some cancers where any chance of infection is critically dangerous, and I have no doubt that my parents in-law would have taken in the fuzzy brood if it had come to that, but in all due respect to that first nurse ... what an utterly asinine thing to say to a patient.

My wife was in school while I was sick and I absolutely refused to let her quit, so there were many days when I was alone in the house. Having the cats and Naktia around gave me company. They didn't care if I wanted to talk, or not, which is helps avoid some of those awkward conversations you have with people when you're seriously ill. The pets were someone to watch TV with, take naps with, to give a cuddle when I needed it and the cats would even play board games with me, as long as I was okay playing by their rules.

What I came to realize was that, sick or not, they still needed me. I was the guy with the opposable thumbs who got them their food, stuffed them with treats, played with their toys and scratched their ears. And Nakita still needed her walks.

Around this time, Nakita was starting into that inevitable decline familiar to anyone with an older dog; walking a little slower and sleeping longer. She was getting too old to run away, was never that interested in other dogs and completely ignored cats and kids. All she really wanted to do was sniff at things. This made her the perfect dog for someone in my condition and between February and April we wore a groove into the neighborhood sidewalks, getting the exercise and fresh air I desperately needed between the long stints stuck in the hospital. She got so good at the route that I stopped holding her lead most of the time. I'd just drape it over her back so I could grab it to cross the street or if we were near a strange dog.

That year, all my interactions with friends or family had a constant undertone of concern; the closer they were to me, the more pronounced the feeling. And being alone just gave me too much time to think. Being with Nakita gave me something that absolutely nobody else could have. She never asked how I was feeling and gave me something mundane, but necessary to focus on. What she ended up giving me were a few blessed minutes a week when I wasn't sick.

Just like that day in the woods back in January, I was just some guy taking his dog for a walk.

Last Thursday night, we took Nakita for her regular walk around the neighborhood. Then after supper she got a pork-chop bone to chew on and she went to sleep. When she woke up the next morning, her back hips had completely given out and she couldn't stand anymore. We took her to the vet for the last time that evening.

It was almost one year to the day of my last chemotherapy session.

Goodbye my Nakita. I am going to miss that smile. 

Tumour Tatt

We asked Doc if it was okay for me to get a tattoo over my left chest to commemorate the removal of Kuato and she was surprisingly supportive. Apparently, it is not uncommon, though a Google search turns up mostly pink ribbons (and having learned a little about the insidiousness of Breast Cancer I completely understand why).

What I am trying to do know is figure out what I want and what would be fitting. I'm looking for comments and suggestions. Here are my ideas so far:

Spider

A play on my last name combined with (like a snake on a caduceus) the dual symbolism of healing and poison. I was thinking of a knotted spider sitting on a web that stretched between my many scars. M is not a fan of this one, saying it would be gross and morbid.

Tsuba

The guard of a samurai sword. The story I heard was they were made to be works of art so that the last thing your opponent would ever see would be beautiful, but I like it more for its actual purpose as a protector. What to put on it is the question. The common battling dragon and tiger motif is one idea (also happen to be M and my Chinese horoscope signs), as well as possibly combining the spider or kraken ideas, though I haven’t found a good model yet.

Kraken

This one I keep coming back to. To me it represents mystery and loss. The mystery of how I got cancer (it doesn’t run in my family) and the ever constant threat of its return. Plus the permanent damage it and the chemo have wrecked on my body and all the losses that have come with that. But to me mystery also represents hope and the future; there is so much we do not know about this limited reality in which exist. It is the desire to unlock those mysteries is what pushes us forward and makes us grow, both as individuals and as a species.

It also happens to be a really kick-ass rum.

OTHER TATTOO IDEAS

As some point I am getting a version of this:

though I don’t see it on my chest.

And I want the line, Still is still moving (Willie Nelson), maybe on my forearm.  

My Own Fucking Fault

It is my fault I got cancer. I don’t mean that I did it deliberately or that I wanted it to happen, but cancer is a glitch in the body’s normal system of cell division. The resulting cancer was as much a part of me as my lungs, my eyes or my heart.

My body, my fault.

This is a thought that occurred to me sometime about halfway through the chemo when I was looking for someone to blame. Best guess is that the medication I was taking for my Crohn’s Disease may have triggered the cancer, but ultimately I was aware that there was a one in a thousand chance of developing cancer associated with the drug and I took it anyway.

My fault.

Then I began to think of everything else that had gone wrong in my life and kept coming back to the same conclusion; I could blame other people and make all the excuses I wanted, but ultimately it comes down to one very simple thing …

It was my own fucking fault.

When we’re babies almost nothing is our fault. We at the mercy of our caregivers, our environment and a world we cannot hope to understand yet. As we grow we take on more and more responsibilities until sometime in your late teens when pretty much everything in your life is now your responsibility. That is not to say you won’t make some colossally stupid decisions along the way, but that is okay; screwing up is a crucial part of growing up. Fuck, it’s a crucial part of being a human being. We don’t ever stop making mistakes.

But if you are truly honest with yourself, almost everything that happens to you is your own fucking fault. Whining that it was someone else’s responsibility or screw up is useless at best and sheer cowardliness at worst. Either way, nothing gets done.

It sounds bleak, but there is a very powerful upside: if it is your fault, you can fix it. And if you can’t fix it, at least you will learn from it, which is the whole point of fucking up in the first place.