Archive for April, 2010

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A weepy bathtub moment

April 29, 2010

I’v e never cried about my cancer diagnosis. Not once. I’m not in denial or some blocked mental place, in fact, I probably have more introspection than is healthy. But I do cry every once in a while, about my Dad’s cancer. My Dad died over seven years ago after ten years and five bouts with this awful disease. I’m more than embarrassed to admit that I don’t even know if his reoccurrences were new primary cancers or metastises. I didn’t think to ask. I was just so self involved with being a college kid and dating and getting married that I didn’t even know to ask about the progression of his disease. He did 5 rounds of chemo, 5 rounds of radiation, several surgeries, most of which I wasn’t even there for. His procedures got to be so numerous, they started to feel routine to me and, god help me, not a big deal.

He had Catholic Charities volunteers drive him to and from treatment. Where was I? I don’t recall. I honestly don’t even remember what was more important than driving my Dad to chemo. It was probably college or work or some seemingly important engagement, but I know now, it couldn’t have been more important than spending time with my Dad and providing comfort throughout his fight. A year of school or a new McJob would have been a menial price to pay for those hours I could have had. For the support I could have been.

And I know. I KNOW, that the reason I never left school or quit a job is that my Dad would have been furious. The only thing that would have made him more angry than cancer would have been any lost opportunity for me. I understand that the reason I had no clue about the gravity of his struggle is that he wanted it that way. To exist as a burden to his only child would have been unconscionable. He never voiced any hint of what treatment was like. I remained blissfully ignorant of the details of chemo until I experienced it myself. And only then, on a random weeknight, many years after he was gone, did I ever shed a tear.

I was taking a bath. (What is it about bathtubs that make us so vulnerable? I know there’s the naked thing and all, but what is it that makes your emotions gush out of you like boozy vapors after a major bender? Seriously. It’s like the feelings steam out of my pores or something. Weird.) And I had a fleeting memory of a conversation I had on the phone with him during one of his lengthy hospital stays.

Me: How ya doin?

Dad: I’m bored.

Me: I bet.

Dad: Yeah….I’ve counted all the tiled in the ceiling. Measured exactly how many steps it takes to get to the bathroom. And I’ve plotted your Mother’s demise 357 different ways….three of them are flawed.

God the man had timing. I just erupted. So freakin funny. Especially with his weary, slurred speech and slight hint of vocal smile.

Yeah, I just cracked up laughing in the privacy of my tub and then melted into a bawling mess for a good twenty minutes. The snot-dripping, hiccuping, gasping for breath, kind of weeping that you can’t even pretend to hide. I wasn’t crying because he was gone. I was crying because I felt like a crappy excuse for a daughter. How on earth could I have not been there for him? How could I have gone about my stupid day to day shifts at a mediocre pool hall, reeking of desperation every time I crossed the threshold of my low rent agent’s office for a shitty non-union audition? Really? That was more important than some quality banter with my own Father while he was on a drip. Really? I’m beyond ashamed.

The only solace I have is this. I just didn’t know. I didn’t “get it” like I do now. And sadly, no matter how close you are to a cancer patient, no matter how much you love and care for them in all of the messy, painful, ugly details; you probably won’t “get it” either. It’s why I maintain that no matter how numerous your friends, no matter how strong your support, cancer is a lonely fucking disease. It just is. The battle you wage with your mind, beyond diagnosis, throughout treatment, and from what I gather, even beyond remission, happens in solitude.

My purpose in sharing these feelings is mostly selfish. I’m really, really trying to forgive myself, but I’m not quite there yet. Somewhere inside, I know my Dad wanted every moment of happiness for me and my tears would disappoint him. But still, I feel I was extremely selfish and inadequate as a young woman with a dedicated Father. Yet, maybe some good can follow. Maybe a weary caregiver will read this and forgive their loved one for demanding to be left alone and do something for themself. Maybe a patient will think twice before saying “You just don’t understand!” and simply be thankful for the company. And maybe I’ll make peace with my shortcomings.

Do me a favor. If you ever have the pleasure of enjoying a great glass of red Burgundy, (the real deal French stuff, not the crap in a jug) stop for just a moment, and think of Tom Ward. He was a pretty great guy. And a terrific Dad.

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My first trophy since High School Speech and Debate

April 26, 2010

So check me out; I won an award for my blog!

As you can imagine, I am both thrilled and humbled. However, I was caught a bit off guard when the Hive Awards asked the winners to post something about the inspiration for starting a blog. I have always thought that question was something akin to “Why do think anyone cares about the cheese sandwich you had for lunch?” Indeed, I too once thought blogging was not unlike producing a one man stage production; the ultimate in egotism. So why did I start my written version of “Just Jack”?

Well, cancer does that kind of thing to you. It makes you want to offer some grand gesture to the world. Maybe it comes from that feeling of “holy crap, I almost died!”? Suddenly you feel that some higher being has a purpose for you, since they let you linger on the planet a bit longer. You want to fulfill some kind of obligation to your version of the man upstairs. Maybe even buy a little more time in this world via karma. But more likely, I think this desire to communicate a big message is a need to leave your stamp on the earth. The thought that someday, no one alive will remember you is a difficult one to stomach. When I’m gone, will there be anything left behind? Any reason for another human being to think of me? Because if there’s not, then what the hell am I doing here in the first place? That thought is really damn troubling and taps my eternal regret for taking a class in Existentialism in college. Anyway, I think that’s where I got started.

What propelled me to keep going was a need for company to my misery. I just wanted to kvetch with people my own age who were going through the same thing I was. I wanted to ask questions about insomnia and neuropathy and, truth be told, AstroGlide. (Yep, surgical menopause can leave you pretty dry in the nether regions.) There were numerous great books out there to cheer me on to survivorship. Plenty of stories of beating the odds. However, all of these memoir type offerings only dealt with the head game when it comes to cancer. Now the havoc that treatment wreaks on your noggin is profound and definitely deserves many lines of print. But I longed for someone to tell me how the hell to take a shower without getting my pump and chemo line wet. (Well placed Saran Wrap and a hand held shower attachment. Then engage in a game of naked shower Twister.) I wanted answers. Details. Concrete info I could use to fight this crappy disease and all the side effects that come bundled with it. And I found what I was looking for on Planet Cancer.

Planet Cancer is a social media site for young adults with cancer. I like to call it “Facebook for the Fucked”. Here I could create a page to tell my story and post questions about Avastin and bloody noses. (Use a neti pot!) I even found some butt cancer brethren right here in Chicago. Huzzah! Planet Cancer also offers members an easy blogging platform, so you can share your thoughts to a limited or public group of fellow tumory folk. I started getting comments from young cancer fighters from all over the world, thanking me for addressing the down and dirty aspects of treatment. I started voicing those moments when you are trapped in the bathroom with an incredibly painful bout of constipation, and despite an incredible support network of friends and family, you feel utterly and completely alone. Guess what? Lots of patients get plugged up from chemo and want answers too. They’re just mortified to talk about it. (Keep some soft fiber in your daily diet. Oatmeal is good. Soft on the entrance and the exit. Get some DucoLace from your doc and keep the dreaded enema apparatus on hand for extreme emergencies. Trust me, you will be in no shape to make your way to a 24 hour Walgreens in this condition.)

What keeps me going is a desire to document my journey and try to make even a tiny bit of sense out of it. I also have a need to shake my dark feelings and humorous anecdotes out of my brain and into the laps of folks who also need kinship. But most of all, it’s the feedback. The heartfelt messages from survivors thanking me for articulating what they were feeling, but couldn’t express. The DMs that say, “Thank God I’m not the only one!” Even a simple “You rock” tweet, makes me smile.

Many, many friends and readers have encouraged me to write a book. After long consideration, I honestly intend to do so. I just had to figure out how and why my book would be different from the zillions of other “I beat cancer and you can too!” stories. With the help of a myriad of seminars at SXSW and old fashioned horse sense from my pals, I think I have a handle on it. But nothing will replace the joy of immediacy in my blog. When I’m feeling post chemo queasy and pissed off late at night, I need only put my thoughts to screen. Usually, within an hour someone gives me a “Me too. This blows!” or “Try some peppermint tea or ginger candies”.

My cancer is inoperable. At this point in time, the plan is to do chemo for the rest of my life. We basically zap the crap out of my mets to keep them at bay for as long as possible. Or until someone invents a procedure or conducts a clinical trial that might offer me a curative option. While many would look at this as a dire and intolerable situation, I do not. I see it as a constant supply of material. And further justification in drawing my initials in every wet patch of Chicago’s concrete.

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swallowing my pride

April 13, 2010

I’m miserable.  So, if you’re looking for one of my uplifting tales of conquering cancer, probably check out a different post. I think this one will still be pretty funny though, so read on if you’re up for this sort of thing.

Like I said, I’m miserable. I’m having a really rotten combo of side effects from chemo and they’ve lasted for almost a week. While I am incredibly uncomfortable on the physical front (or in my case, behind) this is the kind of thing that really does a number on my head. I wonder if this is what I need to expect from here on out. Is this my “new normal”? Cause if it is, it sucks.

Here’s my short list of grievances. My throat has swollen to the point that it is painful to swallow. (That’s what she said!) Even getting my pills down is a chore. Literally, every swallow comes with effort and pain. And I have this freaky thoughts that maybe my throat might close all together and I won’t be able to breathe and I’ll die gasping for air on my couch in my B tier of jammies.

I was trying to do the mind over matter thing, so I asked my awesome hubby to make me tacos. “Tacos will cure me,” I thought. Not so. The interior of my mouth has several sores and its terribly swollen and sensitive to boot. My jaw hurts and I can’t really open my mouth very wide. (Something I am usually accustomed to.) I bit into my tasty taco, only to have the tortilla feel as if it was scraping the interior of my cheeks. I also made the fatal error of putting my usual pico de gaillo on my dinner. #epicFAIL. The jalepeno bits sought out my mouth sores and did a bang up job of searing the hell out of them. Jesus OUCH! Determined, I remade my tacos, sans fire juice, and tried again. Even if I chewed every tasty bit for five minutes, it still hurt going down. I finally just got too frustrated to eat anymore. Anyone who knows me, knows that this is an unfathomable idea to me before now. I LOVE to eat. And I was craving tacos in both a culinary and a nostalgia for Austin kinda way. But, I didn’t totally give up.

There is an evil, but slightly soothing milky liquid in a red bottle called “stomatitis cocktail” that most cancer patients are familiar with. I assure you, it does a grave injustice to respectable and tasty true cocktails. Basically, you swish this murky, slightly viscous liquid in your mouth for a bit to soothe mouth sores and spit it out. What happens next is that a wave of both burning and numbing wash over all the tissue in your yap. Kinda like an oral Ben Gay effect. It tastes nasty, so you also start drooling and having to spit out saliva every 5 seconds. At this point, I usually start to question whether I might just wanna deal with the pain of mouth sores rather than wrangle with this crap.

Knowing that solids were not my friend and that the red bottle sounded more gross than helpful, I decided to try tequila. It also has a numbing effect and doesn’t taste like ass. I mixed up a batch of my favorite summer elixir I call “Fred the Hot Tranny Mess.” The name is a story in and of itself. All you really need to know is that it is basically a cranberry margarita with a rose Champagne floater. While it hurt to even sip my dear Fred, it was a hell of a lot more comforting than Ben Gay for the Bazoo. Score one for me and the blue agave plant.

If this were my only challenge this week, I might have a better outlook. Alas, this is not the case. My hands have also started peeling like a leper’s. (OK, that’s overly dramatic. My fingers aren’t falling off or bleeding or anything, but they are really skin-bubbled, flakey and gross.) Luckily, many pals have sent me super fancy pants moisturizers that really help. I am particularly fond of the Keils line because it is intense, but not super greasy or smelly. The really gloppy stuff feels good but leaves a sheen on my computer keyboard that I can’t imagine is very good for the life of my machine. Plus, repeated lotioning makes me feel like an old lady. I just turned 40 and I’m still sorta sensitive.

On top of the hand and mouth woes, my butt has to weigh in. Captain Hemorrhoid has decided to make my butthole his main outpost. Every time I feel the bathroom call, I get a sense of foreboding. A literal “Oh crap!” Trying to “eliminate” anything through that passageway is a painful process. I’ve been trying to eat more fiber to ease the situation, but with solid food proving to be difficult, this is not easy. Yesterday I choked down a very tasty, but oat laden granola bar in tiny bites. Now I fear that it may feel like a nest of dried twigs on the exit ramp. Sadly, I was right. Every part of my nether regions is painful in a burning, scraping, swollen fashion. I am in so much butt pain, that I am literally seeing stars like I might pass out. Suddenly, the death in my ugly jammies on my couch seems glamorous in comparison to this Elvis inspired scenario.

In taking care of final business, I discover that I am also bleeding down there. Fan. Fucking. Tastic. Over the past week, I have employed the cooling powers of Tucks wipes. For the uninitiated, these are Witch Hazel soaked baby wipes for old people. Now seems like a time where I could use a little cooling power. YIPES! Guess what doesn’t have a cooling effect on open sores? Witch Hazel! The Good Witch is no longer! She cast a spell of fire on my ass and I’m none too pleased. In fact, I am reduced to futilely fanning my butt with my hand in hopes that the meager breeze I can create will extinguish my pain. If that ain’t a picture, let me really draw you a good one.

Any colon cancer patient is obligated to check out any bleeding in the butt department. It can be a sign of really bad things. Usually though, if its bright red in color and just sort of blotting the TP, you’re probably OK. Never the less, I now have to CSI my ass.  I grab the hand mirror, assume a spread eagle stance and take a looksie. Something with the angle and my overhead lighting are making this problematic. Next I try a leg on toilet approach with a right hand mirror, left hand cheek spreader tactic. Again I can’t seem to shed any light on the subject.  This really is the spot where “the sun don’t shine”. Further gymnastics and mirror positions also prove fruitless. Hmmm. I’m in a hell of a naked pickle here.

One old fashioned remedy that always seems to soothe my booty is a long soak in a hot bath with Epsom salts. This sounds both calming and an opportunity for new camera angles. Relaxing and regrouping in my bathtub, I decide to try the mirror trick while on my back and knees to chest. In this moment, I wonder why I wasn’t more popular in college. I also discover the heart of the problem. I have what I can only describe as … diaper rash. I guess all the moisture from the freakin Witch Hazel caused a ripe environment for rash and chafing along with some minimal bleeding. I can’t win.

As I lay there surveying the terrain, I start to envision some kind of freaky, early 70’s feminist retreat where they encourage this kind of exploration.  Lots of 30 something gals in leotards and ethically inspired patchwork skirts voicing their “discoveries”. Strings of beads fill the doorway and somewhere incense is burning. I can now state from experience that this is a load of crap. There is absolutely nothing empowering about having to check out your hoohah in a mirror. The lady parts and the exit door are not exactly pretty up close. Not to mention the naked contortions involved that make you acutely aware of the size of your belly and your thighs. Nope. It’s a big basket of embarrassment and vulnerability that makes me grateful as hell that I’m married to an incredibly sensitive and tolerant guy. One that won’t be shocked or concerned when I tell the world about naked inspections of my anus. Yeah, he’s a keeper.

After toweling off and salvaging what was left of my meager self-esteem, I went in search of some type of ointment or cream to deal with my rash. I happened upon a tube of generic cortisone stuff and thought I hit the jackpot. However, a reading of the label warned “Do not use to treat diaper rash”. There’s not a lot of room on the tube for warnings, so I begin to wonder if someone at the ad agency for the cortisone goop is psychic. It might as well of read, “Chris: don’t even think about putting this on your ass.” Duly noted. Well fucking NOW what?!?

At this point, I declare cancer the winner. Just fuck it all. I’m going to put my sore ass to bed. I gingerly waddle to the couch and do some deep breathing. I know I’ll never fall asleep with an ache in my butt and a reeling brain. I employ one hippie theatre school guided imagery trick after another. No dice. My rear end is throbbing and I can’t help but start composing this blog post in my head. I know I should just suck it up and go type, but dammit I am determined to get some rest. I deserve a few hours of peace. Nothing is working, so I bring in the big guns. A new prescription for Ambien designed to battle my steroid induced insomnia on days one and two of chemo. To add insult to injury; it hurts to swallow the damn pill. OK Big Pharma, make with the nightie night.

I arranged myself in bed with my favorite ratio and positioning of pillows and waited. Finally, some relief arrives. My knee pillow structure has relieved the chafing situation and I’m starting to get that flitting eye movement that indicates sleep is on the way. Plus, I’m getting a slight, all over muscle relaxing that is downright wonderful. Ahhhh. Children and adults around the world are dreaming tonight. I wonder if I’m the only one whose nocturnal visions include unblemished butt cheeks and a hand mirror. Such sweet dreams.