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The final act to be perfomed by the understudy

December 28, 2010

This post is written by Marc Blumer, aka Mr. Wine Diva, aka Chris’ husband.

On Monday, December 27, 2010, Chris passed away after her two-and-a-half year battle with cancer. In that struggle, Chris followed through on her initial vow to kick cancer’s butt and lived an amazing life that she has documented on this blog.

Because so many of you have found strength, humor and solace in Chris’ words about living with cancer, I wanted to share a bit about how she died.

Last summer, as Chris had blogged, she experienced some knee pain that everyone thought was just from being on the wrong side of 40 and this is where Chris’ posts left off. That pain, sadly, turned out to be metastases to the femur. And that signaled the end of her chemo’s efficacy.

The last four months involved a surgery, a clinical chemo trial, many hospitalizations and finally hospice care and her passing yesterday.

I cannot thank the hospice team at Northwestern Hospital enough for the amazing level of care they provided not only to Chris but to me and to Chris’ mom. Every one of them is just a special, special person.

But since Chris’ blog was about the process of going through cancer, I wanted to share what she couldn’t about the end for her life here from my own perspective.

When we received the diagnosis that Chris’ cancer was no longer responding to chemo and that there were not more treatment options, Chris rolled with that news with the grit, determination and humor you’ve all come to know and love over these many months. She talked about squeezing in another trip, about getting well enough to enjoy food again, about not spending her remaining time in bed.

Within just a few weeks however, it became apparent that Chris was never going to be able to eat the food she loved again, to drink wine again, to hang out with friends in a lucid enough state to enjoy their company.

At that point, Chris and I had the talks you have to have when you near the end of life. And during all of this, as you surely noticed, Chris went radio silent on this blog, Facebook and Twitter. The reason for that silence was this.

As Chris was processing these developments, she came to a conclusion that she’d reached the point where it was obvious that all the things she loved about living her life were gone and that in the balance between activity and comfort one must choose during hospice care, she tearfully told me that “I just want to be made comfortable and I hope this goes quick.”

After uttering those words to me, Chris expressed her deepest fear that in accepting the end was near and in actively asking for a high level of comfort where she’d mostly just sleep, she was somehow letting all of you down.

On behalf of everyone who loves Chris, I told her in no uncertain terms that she’d been nothing short of heroic, served as an inspiration and that while losing her was going to be devastating for all of us, the only thing worse would be to see her suffer one more minute than was necessary.

With that, I witnessed a peace come over Chris that she carried through her remaining days.

While the progression of Chris’ disease led to some horrible hours over the last months, Northwestern’s hospice team worked around the clock to manage symptoms and found ways to get her back each time to a level of comfort where she was able to just sleep. Chris died that way, asleep, holding her mother’s hand.

Since her original diagnoses in 2008, Chris lived an amazing life that you all have followed here.

Chris performed in two major plays as an actor while actively getting treatment. Her run with David Cromer’s Cherrywood production last summer ranks among the happiest periods I witnessed for Chris in the sixteen years we’ve been together.

Chris did continue her wine business to the extent she was able. But she also took a part-time job with UIC helping to train med students in the personal side of treatment as a standardized patient – something that she took tremendous pride in that she was able to use her acting skills to give back for the care she’d received.

Personally, we travelled as much as we could. Chris and I went on a South American cruise, we lived in Austin for three months, we attended the SXSW festival, we spent a week on Virginia’s eastern shore, visited Washington D.C. (Chris had never been), spent a week in Savannah and Hilton Head, spent a long weekend at the Koehler resort in Wisconsin and I’m probably forgetting something.

Does it all make up for the forty more years we’d have wished for Chris? Not by a long shot. Was it a hell of a good time with the time she had? Absolutely.

There is no way to replace Chris in any of our lives. All we can do is carry what she gave us in our heads and in our hearts. She’d be really hacked off if we didn’t.

A memorial service is being planned for January 9th at Drake & Sons funeral home at 5303 N. Western Ave. in Chicago at 1:00 p.m.

In lieu of flowers, Chris has asked you consider a donation to Livestrong at http://www.livestrong.org/Donate/Giving-Options/Gifts-in-Honor-or-Memory

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Odds and Ends

August 23, 2010

This is mostly a note to reassure everyone I’m not dead.

Nope. Alive.

I needed some time this summer to just kinda forget about about cancer, which was good timing because I need to face it pretty head on again come September. I don’t mean to be coy – I’ll spill my guts soon enough, but I need some time to let some of the news sit and stew a bit before I serve it to the world.  I’m not gonna croak anytime soon, but I have new challenges and new drugs to adjust to in the near future. So, don’t freak out OK.

Mostly, I’ve spent the summer performing in a runaway hit show called “Cherrywood” in Chicago to sold out houses and tons of press. Its kind of the brass ring in the world of storefront Chicago theatre. THIS is the kind of project we suffer all the bad late night, nearly porn crap and no pay for. I am surrounded by a freakishly large and talented cast and crew that infuse me with life every time I cross the threshold of the theatre which has more in common with a frat house than an arts venue. I happily wade through bum piss in the doorway and Fabreeze the crap out of the dressing area to be a part of this magical play. It has helped me push my physical limits and given my brain a place to escape 4 nights a week. I will have some serious post partum when this thing is over. Be forewarned. I will need a lot of booze and gelato.

In the next 10 days or so, my life will be …interesting. I was scheduled to have a fairly simple outpatient scope of my knee today. The plan was two days on crutches and two days to gimp, but should be fine for my final performances this weekend. Then I would have an additional few days to work up strength before I jet off to France with Mom on Sept 1st for 3 weeks of touring around Provence. Perfectly planned. All according to schedule.

Until I got a call from my doctor’s assistant on Thursday informing me that my surgeon…died. I had only met the man once and obviously I feel terrible for his family and friends and co-workers, but my first (selfish) thought was “CRAP! NOW, when can I get surgery?!?”. I don’t know any of the details other than this was a fairly young man and he was on vacation out of the country. He was very kind and patient with me on the phone – gave his personal cell phone # and made an exception from his usual surgery dates to accomodate me and my nutty plans. He was, in the limited capacity I knew him, a great guy.

However…WTF! Who else does this kind of thing happen to but me?!? So while his poor assistant is scrambling to figure out how to handle his patients, and undoubtedly grieving at the same time, I have to wait and hope they can get me in anytime before the 1st. In the meantime, I have a cast and crew that is depending on me for the final performances of a major show. And before any of you ask, NO. Non-union theatre does not operate with understudies. Unless you are bleeding profusely from the head, it is understood that you will be on stage. That is the ethic that is expected. I made a decision to ask the director and company members to have someone learn my part in case I get a chance to have surgery last minute. Luckily, there are several folks who were recently added to the show due to its extension and we have been in a constant flux of shuffling people around, so its not as unreasonable request as it would normally be. The staff couldn’t have been more supportive and the young guy who is learning my part is a terrific actor. In fact, he’ll probably be better than me which is both comforting and threatening at the same time.

In addition to this update, I have a few odds and ends I’d like to share with my tumory pals:

Lies I Tell Myself SoThat I Don’t Feel Old

1. I take Tums for the added Calcium.

2. I purchase Icy Hot over Ben Gay because my muscle aches are more athletic in nature.

3. I don’t need Metamucil, a good probiotic should do the trick.

4. I use my portable grocery cart for convenience, not an ad-hoc walker.

5. I’m wearing my clothes from Jr. High because the retro 80’s look is in, not because I never really stopped wearing them in the first place.

Other things of note: You should be watching The Big C on Showtime. Its a dark comedy about cancer with Laura Linney in the lead role and a college pal of mine as head writer/producer.  The world needs more shows like this – not even about cancer – great writing and edgy material that rings true with everyone in this wacky society.

I proposed a panel for the SXSW festival in Austin that I could use your support with. If my panel gets accepted, I get a free badge to part of the festival that saves me about $600. Its’ called Virtual Tumor Assassins: Online Support for Cancer Patients. About 30% of the selection process is community voting, so if you could spend a minute or so clicking on the link and voting for me (only have to do it once!) I would really appreciate it. Otherwise, I may have to start selling my pain meds on the street.

I realize I have neglected my food and wine portion of this blog for a while. The whole world of wine has seemed kind of trite and uninteresting to me lately. I’ve just been in a jaded phase where no wine priced over $20 makes sense and I never want to see another moussed, foamed, deconstructed anything on my plate, let alone be instructed on how to eat it.  I am hoping the simple pleasures of Provence renew my culinary spirit and there will be far more wine and dine posts than OTC meds posts in September.

Pack in those last summer-only activities and eat peaches, tomatoes, watermelon and corn. That’s what I’ll be doing. Unless I’m having surgery on my knee – in which case I’ll be high on narcotics and watching SpongeBob.

peace to you all,

CB

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Dr. McFlurry and “free hits”

July 2, 2010

Doctors are pressured to spend less and less time with patients in order to make enough dough to pay off their med school bills. It sucks. And patients pay the price. Just when we need more good people going in to general practice of internal medicine, insurance companies decide to pay those folks less for routine visits. A great med student, saddled with a bunch of loans, almost has to go in to a specialty practice if they ever hope to be financially solvent. This situation blows for everyone involved. But especially for patients who wait in anticipation of scan or test results, only to be rushed through the news or the decision making process that may result.

A pal of mine got a call from her doc this week. A message on her voice mail. “Just letting you know the scans look fine!” OK, not ideal – but better than waiting and worrying longer over nothing. UNTIL, she got a second call. This time she picked up.  Dr. McFlurry says, “Oh hi there. I just wanted to let you know that I may have missed something on your film. The radiologist sees a spot or possible reoccurrance, so why don’t you make an appointment to see me and we can go over things together?”

WHHHHAAAAAT? In what world could this possibly be acceptable communication?!? Seriously.

In this case, I think a patient should be granted what we called in grade school, a “free hit”. Dr. McFlurry should be restrained by an undoubtedly overworked nurse while my pal gets to sucker punch him. Just once. No need for extreme violence. Just a reminder that patients deserve more respect. My guess is this would cut down on “oopsie, my bad” phone calls like the one my pal got. And if they get hurt, well hell, they’re doctors right? One of their pals can stitch ‘em up at a discount.

It reminded me of my encounter with Oncology Intern Barbie. I had been waiting with my hubby for over an hour to see Dr. Fab and get results from my latest scan. The one previous had shown the glorious words “Almost complete resolution of all masses.” In other words, I was THIS close to the official NED or remission status. I hoped today would be the day I could put all of this behind me and move on.

And in trots Oncology Intern Barbie. She was very young and fit with long wavy black hair and pink lipstick. OIB (as she will be referred to from here on out) was perky and had pretty shoes. She explained that she was here to do a preliminary chat before the doc came in and completed the visit. Fine. I’ll sit through OIBs song and dance in the interest of education and bettering the medical profession. But I honestly hate the “almost docs” chat because they can never give you any definitive answers and Top Doc always ends up asking you the same questions Almost Doc does. It seems like a huge waste of MY time. But whatevs, I think I may be done with this for a long while.

OIB plops down at the computer and pulls up my file. This is what she says “OIB”, what I say “me”,  and what I’m really thinking “brain”.

OIB: Ok…lets see here….ok. Adenocarcinoma…..slightly enlarged masses…possible

Me: What?

Brain: What the fuck?!?

OIB: Yes, it says here that the tumors have grown a bit since your last scan.

Me: Are you sure? My last scan didn’t show any tumors at all.

Brain: Double check Bimbo! Stat!

OIB: That is definitely what the report shows.

Me: Ok…well, what does that mean? Where are they? How much have they grown?

Brain: What the fuck?!? WHAT?! TELL ME WHAT THIS ALL MEANS TRIXIE RIGHT DAMN NOW!

OIB: Ya know what? I think its best if Dr. Fab goes over these results with you. Why don’t I go see if she’s ready to see you?

Brain: YEAH! WHY DON”T YOU!

Me: ok.

OIB: I’ll be right back.

Brain: I hate your face.

OIB exits

Me (to hubby): What the HELL was THAT?

Hubby: I …don’t know.

Me: She just fucking “yadda yadda’d” my cancer! I can’t freaking believe that skinny bitch just yadda yadda’d me!

Hubby: Yeah. That was pretty horrible. Lets just wait for Dr. Fab.

me: Fine.

Brain: stupid Barbie.

(enter Dr. Fab and OIB)

Dr . Fab: Hi there. How are you?

Me: I’m a little freaked out.

OIB: I freaked her out.

Brain: YES! YES YOU DID YOU MINDLESS TWAT!

Me: yeah, you kinda did.

Dr. Fab: OK, don’t freak out. Let me show you what we’re talking about and what we do next.

Me: ok.

Hubby: Thank you.

(OIB slinks out door)

Brain: I wonder if I can ask to never see that stupid broad again? I probably can. I’m the patient, right? I don’t have to put up with this! She really scared me and I think she deserves a mild caning!

Dr. Fab: I’m sorry you were freaked out.

Me:  It’s ok.

Brain:  Pussy.

Dr. Fab then led me to the doctors’ area of the office and actually showed me on the scan what had emerged. Very very tiny spots on my liver. They were small and very manageable.  In the big scheme, the news wasn’t good. I had to consider more chemo and/or major surgery. But she explained my situation in a way that made me feel hopeful and resilient, and not like unremarkable lobster bisque. She’s a real pro.

Well over a year later, I have still not seen OIB again. In fact, I’ve only seen one other Almost Doc and she was patient and kind and devoid of bimbo-like traits. Perhaps Dr. Fab is screening them for me? I kind of hope so. In the meantime, I propose an amendment to the generally accepted version of Patients’ Rights. The “free hits” clause. Who’s with me?

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the glamour of show biz

June 1, 2010

So, I’m in this play.

I’m not sure if I’ve mentioned it on this blog before, but I did actually get an undergrad degree from Northwestern in theatre. (Note the pretentious “RE” spelling. ) For many years of my life this education seemed pretty useless. Sure, I can amuse people at parties with funny voices, but that hardly seems worth 80K. Over time, I found many ways to use my skills in performance in things like event planning, education, research, public speaking etc. but didn’t do much of what I would consider “acting”for a good ten years. You know, besides pretending to give a shit about how many bottles some rich douchebag has in his cellar.

About 8 years ago, I got back on the horse. Headshots. Agent. Expensive haircut. The whole shebang. I felt like a legit artist again and perhaps even more equipped to handle the biz. Knowing I could make a living doing something else gave me the ability to walk into an audition without reeking of desperation. I had that much more life experience to draw on and a comfort level performing that I had never experienced before. What I’ve noticed recently is that post diagnosis, where once I was comfortable in auditions, I am now fearless. I honestly don’t think there is a director in this city that could really intimidate me anymore.  And I’m enjoying it.

Last year during my brief period of sorta kinda remission, I did a leading role in a wonderful show with some truly inspiring people. The pay was pittance, but I really felt like I had my A game back. I was able to do hours of physical comedy and (thank ya jebus!) chemo brain did not affect my ability to memorize lines, which had been a huge fear. My life as an artist was coming back to me! And, as happens to many cancer patients, one crappy CT scan changed everything in my life once again.

After another surgery, a shift to a life of indefinite chemo and some serious hair loss, I wondered if I’d ever act again. Over the last 18 months, I’ve managed to slowly get back in the game. My agents have been FANTASTIC throughout this process, sending me on countless voice over auditions when my hair prevented me from on camera work. (Huge thank yous to the crew at Shirley Hamilton!) I got a fabulous new wig, hooked up my home recording equipment for more voice work, and started to shop for headshot photographers once again. The one thing I just couldn’t bring myself to do was look at theatre auditions.  I had a genuine fear that I couldn’t handle a rehearsal and performance schedule anymore. Two big slices in my ab muscles have made me even less flexible than I was before cancer. And what about the effects of chemo brain after all these new drugs? I recently put frozen peaches in the cabinet with ziplock bags instead of the freezer. I don’t even want to think about what’s happened to my ability to memorize text. I was scared to audition for anything, lest I discover I was no longer capable of working on stage.

And then I got an email in my spam folder. An unassuming message inviting me to audition for a play I’d never heard of for a theatre company I’d never worked with. Huh. That’s weird… I skimmed the email half expecting to see an embedded ad for Viagra or stuffed animal fetish porn. OK. Looks legit. Oh wait!…the show is directed by David Cromer! For those of you outside the world of theatre, David is a pretty big deal. (I think he would be highly amused if he read this though. Maybe even give a good spit take from an adult beverage.) David recently directed a now famous production of Our Town that had been running on Broadway for about two years. He has landed a couple of Broadway musicals since then and come to be quite the darling of the critics for now. He’s been acting and directing terrific stuff for years, but only recently has the established thee-a-tah elite deemed to fuss over him. Anyhoo, I was suddenly kinda freaked out and excited all at once. I hadn’t seen Mr. Cromer since I took a master’s class in Chekhov scene work about 5 years ago. (Yeah, that’s as big a hootenanny as you imagine.) I simply had to go to this audition.

Sparing all of you the hand wringing details, I had a pretty decent audition and David  was mercifully already aware of my disease. The chit chat part of auditions can be incredibly awkward under normal circumstances. I can only imagine what it would be like to add “Oh, and just an FYI; I have cancer.” Best of all; I was offered a role in the show. In fact, the whole experience so far has been surprisingly free of gaping mouth cancer drama. The costume designer totally rolled with my whole IV/ fanny pack thing. He mused that it just might make my character seem kinda butch, but if I wanted, he would happily stitch “chemo, not lesbo” on my device. He’s a good egg.

As you can imagine, when meeting a new cast of 50 (yes, 50!) actors, I don’t exactly open with “Hi. I’m Chris. I have cancer.” But over the course of these first few rehearsals, I’ve felt comfortable sharing my situation with many of my fellow cast members. Not one has gone bonkers on me. This is a huge testament to the folks in this show. I know a whole bunch of thespian types who would flip out upon learning news of toe fungus; stage four cancer might make their heads explode. Drama Queens are a professional hazard in this biz and I am quite relieved to meet so many generally well-adjusted folk involved in this project.

I think I unconsciously decided to tackle my rehearsal and chemo and social schedule like the Tasmanian Devil. I’m just gonna go and go and go and no one can stop me! Until I hit a wall and sleep for 14 hours. That day was today. I have been working a part time desk job during the day, rehearsing at night and drinking my face off over the holiday weekend. I should probably add that I did this for two days while actually on the drip. I guess I’ve been trying to prove to myself that cancer won’t impact my ability to act in my “new normal” life. Perhaps this was a tad unrealistic. I felt like complete crap all day today. Unable to really sleep and yet, unable to really function either. I barely made it through a shortened rehearsal today without napping on the poor 20 something blocked next to me on a couch. Two iced coffees and fear of appearing unprepared saved me.

While I certainly understand that I can not keep up this rock and roll lifestyle, I also believe that testing your stamina now and again is useful as well. No, I can’t work and party like a frat boy, but I can handle a lot more physical activity than I would have guessed. I’m glad I pushed myself. Yes, I lost an entire day to recovery, but now I know how to plan and adjust for tech week and performance weekends. I feel I proved to my body that I can “tread the boards” without any coddling or special treatment. All I need is a costume that hides my IV connection. In the world of storefront theatre actresses, that’s pretty low maintenance.

During rehearsal tonight, I spent 2 hours perched on the arm of a couch that a college dorm might discard. It would be pretty damn uncomfortable for anyone under normal circumstances, but I have an impeccably-positioned set of hemorrhoids that rest on the one cheek I get to perch on the uncushioned part of this crappy sofa. I thought more than once about asking to be placed somewhere else on stage, but then I’d have to tell a room full of 60 actors and designers that I have blisters on my butt. I decided to tough it out. Maybe I’m not as fearless as I thought.

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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.

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