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No such thing as a dumb question…or is there?

Jeff Foxworthy, comedian

If I had a buck for every time I’ve typed that out in the process of answering a question on a forum – don’t worry, there’s no such thing as a dumb question…

But on those same forums, threads crop up regularly with titles like “Dumb things people say,” and “Stupid questions people ask cancer patients.” And all the patients bemoan the dumb, stupid and insensitive things non-patients say to them.

Reading all of those threads, I wonder why cancer patients hold themselves exempt from the “dumb/insensitive question” test, and get insulted if anyone challenges the repeat questioner or the person who refuses to try to think things out for himself. Did cancer suddenly make us all smarter and more considerate than the rest of the world? I’m not sure that’s a safe generalization – I’ve had my share of chemo brain, during which I’ve done (and said) my share of dumb things.

Today, as I read a thread on a forum where one poster reassured another that there was no such thing as a dumb question, I wondered again – how is it that cancer patients are exempt from the dumb/insensitive question classification when we’re so quick to apply it to others who don’t have cancer?

Comedian Jeff Foxworthy has made a career out of posing situations and then concluding, from that situation, that “you might be a redneck.” In Foxworthy’s routine, if “you own a house that is mobile and 5 cars that aren’t,” or “your coffee table used to be a cable spool,” or “your mother has ‘ammo’ on her Christmas list,” then you might be a redneck.

So in case you’re one of those cancer patients who desperately needs some help with objective filtering when asking questions on forums:

If you didn’t bother to read the forum’s current topic list to see if your question is already being discussed, it might be a dumb question.

If you didn’t bother to use the search function for your subject before posting, then it might be a dumb question.

If a discussion has been active for a few days, with links to sites with more information, and you didn’t read any of the links or information before making your post, it might be a dumb question.

If you’re one of those patients who is still using the excuses “not everyone can know everything” or “I’m new and I’m trying to learn” and it’s been at least six months since you or your loved one has been diagnosed, it might be a dumb question.

If someone answers your post with “what do you think?” or “what does your doctor say?” then it’s either a dumb question, or it’s inappropriate to expect people on the internet to be able to answer it.

If the question involves wondering whether the current symptoms are worth a trip to the ER or a call to the onc’s office, it’s a dumb question with a capital “D”! Trust me, on that one, the right answer is always “go to the ER” or “call the onc!”

On the sensitivity scale, forum etiquette is sometimes hard to grasp. But on a practical level:

If you ask every single person with a diagnosis similar to you or your loved one every intimate detail of their dx and treatment, no matter what the actual subject of the thread, you might be insensitive.

If you go to multiple forums and get the same advice in each place, but ignore it, you might be insensitive.

If you’ve been around a cancer support forum for more than a couple months, and witnessed the passing of several stage IV participants, but still ask whether stage IV patients are considered cured after five years just like stage I-II-III patients, you might be insensitive.

If you ask the same question over and over for months with only slight variations, hoping someone will give you a different answer, you might be insensitive.

If you turn every conversation to the single question on your own agenda, repeatedly, you might be insensitive.

If you are constantly insisting that doctors gave up on you, that big pharma and doctors are only in it for the money, and that the “machine” of medicine is not about trying to cure disease, you might be insensitive.

If you post age-ist comments like having cancer in your 20s or 30s is just so much more unfair or cruel or tragic than getting cancer when you are older than whatever age you are, you might be insensitive.

If you make a dozen posts within a few days asking all of your questions without first checking to see if they’ve been asked before, you might be insensitive. You’re also probably scared and new – but that doesn’t excuse being high-maintenance or sucking all the air out of the room by trying to make everyone focus on your needs and questions all the time.

We are cancer patients (or caregivers) and we are scared and we are just as likely (maybe more so) in that condition to be rude and to ask dumb, insensitive questions. Newbies get a pass on forums as long as they’re still in the honeymoon newbie phase – that first month or two of posting when more experienced posters are willing to bend over backwards to help you understand what is happening and how to cope.

But that honeymoon newbie phase – that’s your learning curve. You’ve only got the one shot. You need to actually learn, absorb some of the things people are counseling you, start to think independently, stop expecting people to just keep handing you answers.

We don’t get a perpetual free pass to be dumb or insensitive, high-maintenance or the kinds of people who suck the air out of a room just because we have cancer. There are dumb and insensitive questions asked on cancer support forums, and too  often, it’s a cancer patient asking them.

It’s time we all grew up and took responsibility for those times when even we behave badly.

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A little tech can get you through

When I started treatment the first week of May, 2004, I had a pretty basic LG flip phone and a Palm m505 PDA. It wasn’t too long before I decided that I needed an iPod (I know, a little late to the party, but seven to nine hours in an infusion chair in a single day, and a total of 12-15 hours in infusion every two weeks, convinced me that despite the cost, I was worth it. On to my first iPod, a third-generation 10g box that is heavier and bigger than most modern smart phones. 7+ years after purchase, it no longer holds a charge – but it runs just fine from a iPod dock as part of my home stereo system. Read more

My national edition Colorectal Cancer column for Examiner.com

I am a freelance writer. One of my steady clients is Examiner.com, a news and information website. No, it’s neither the Washington DC Examiner nor the San Francisco Examiner (both hard-copy newspaper outlets that also have online sites.) But Examiner.com, the DC Examiner and SF Examiner are all owned by the same guy, billionaire Philip Anshutz.

Until last month I wrote two columns (Syracuse Dog Training and Syracuse Food.) My strategy for Examiner.com was to add a third, national edition column as soon as I moved into full-time freelancing. The only hard part was picking a topic. I looked at several things, but finally realized that one of the big holes in their content was colorectal cancer. No local examiners, and nobody writing about CRC at the national level. I wasn’t sure about being identified, once again, as Cancer Girl. But ultimately, I went for it.

Timing is everything, and the timing for this is hard right now. But at the end of March, as I was struggling through my first two chemo treatments, I got the word that I’ve been given the new Colorectal Cancer column in the national edition of Examiner.com.

This column gives me the opportunity to put colorectal cancer information, education, awareness and events in front of a completely different audience and demographic than typically reads patient support sites. I can write about Alex Stratta, the colon cancer survivor and chef-testant competing in Bravo’s current run of Top Chef Masters. I can bring in people who need to know more about colorectal cancer before it’s time for their first colonoscopy. I can write about patient freebies like Colonoscopy for Dummies.

I can bridge the gaps between the various advocacy and support organizations, putting all of their messages on the same page. I can publicize resources that current patients need, and on a national level increase awareness about local events that promote CRC awareness. I can plug  screening and legislative advocacy in every column using the host of public service videos on YouTube.

I hope that Colorectal Cancer can put CRC information in front of casual internet searchers who may not otherwise be exposed to it. Please come check it out. Tell your friends, bookmark it and share it in your networks. And if you have topics you’d like me to cover, please drop me a comment either here or there. It will let me continue to advocate for CRC awareness even when my mobility is compromised, and (in the interests of full disclosure), Examiner.com is one of my freelance writing clients. So I do get paid, and my freelancing income does help pay for those scanning trips to NYC. So click early…and click often.

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Can I commit to one post a week?

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Image by Bright Meadow via Flickr

I think I can. ;)

There is a PostADay and PostAWeek challenge posted on WordPress.com calling out all bloggers to post more often (or at least more regularly.) And this year, I think I’m going to participate. This is part of their sample first post:

I know it won’t be easy, but it might be fun, inspiring, awesome and wonderful. Therefore I’m promising to make use of The DailyPost, and the community of other bloggers with similiar goals, to help me along the way, including asking for help when I need it and encouraging others when I can.

Please share your thoughts and your comments in the blog – after doing some housekeeping on the website, I’ll be turning comments back on for older posts.

Happy creative and productive 2011!

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Funerals and passing time

http://en.wikipedia.org/wiki/Image:Stopwatch2.jpg
Image via Wikipedia

Sooner or later, a cancer patient has to confront the passing of time in one of the hardest ways – by dealing with the death or funeral of a close friend (or by planning her own funeral.)

I’ve never been comfortable at funerals. Perhaps two of the best were my friend Tim’s memorial after he passed from complications due to AIDs in the mid-90s, and my old boss Donny’s memorial in a church on Onondaga Hill that felt like a garage or a fire hall.

At Tim’s memorial, we gathered in May Memorial Unitarian church, and shared stories of his life, and his struggle with the disease. Religious and non-religious, gay and straight, men and women we stood to salute him, and then walked up the hill and held hands in a circle in the Thornden Park arboretum where his partner Russ planted a tree in his memory.

At Donny’s memorial after he passed from complications due to pancreatic cancer, his political friends and his fire department friends and his family stood to one side, while his old co-workers (me among them) stood in the back, together, and listened to a preacher talk about celebrating life, being in the moment. Again, it felt very one with the buddhist emphasis on mindfulness that softly guides my own days.

Both Tim and Donny’s deaths were expected, from critical life-threatening illnesses. But for me, it’s the death I didn’t see coming that is the hardest to handle.

In 2006, fresh off my liver resection, I ran into Joseph again while checking AOL mail. Joseph. Where to start? Joseph was my flirtation with how the other half lives, a millionaire media/PR guy living in NYC on West 26th St. and 6th Ave. We met at an online media presentation sponsored by SU, and then stumbled into each other again in an AOL chat room, back in ’91 when people actually paid money for hours of online time.

We emailed. We liked what each other had to say. We moved our conversations to the telephone. We talked for hours. One conversation led to another, and to an invitation to join him in NYC for a weekend at the end of February, 1991.

Joseph was, by his own description, a brilliant mind. He was a finalist on Jeopardy. He earned his MBA from Cornell before he was 21. Ten years older than I, I discovered that he’d been a part-time disc jockey for one of the local radio stations while he was attending Cornell – and I’d first heard his deep “radio voice” when I was a teenager.

He’d made his money early on by inventing the playback mechanism that the FCC insisted all radio stations apply to live telephone callers, and then later by inventing various mixing equipment musicians used and the GPS system that was the favorite for single and twin engine private planes. When he wasn’t inventing, he ran a media/PR company. He had friends in the music business, in aviation, in media – and I met many of them, and eventually traveled with Joseph to the trade conferences in those businesses where he was peddling his company or his inventions.

Joseph lived, in NYC and on the road, in a way that I hadn’t experienced long-term. He had two credit cards, but he always paid them in full each month and never carried a balance. He paid cash for most everything personal, especially in NYC. In a city full of amazing restaurants, he was inordinately fond of the little dive. There was this little mainly-breakfast joint over on 9th Ave. in the West Village that he loved for its Sunday brunch special, $6. He was frugal about some things – but he paid over $300 each month to garage his Jeep Grand Cherokee and his full dresser Harley. We did free things, rather than live the high life – and yet, on the road, we rented condo and ordered out and seldom economized.

Sometimes he would hand me a couple of hundred dollars and tell me to buy whatever I needed for a dinner party to entertain some out-of-town clients. He told me to buy whatever I liked (and paid cash) for two stained-glass windows for a redo of his kitchen. On one trip, I hadn’t packed anything suitable for an Upper West Side dinner party, so we went shopping – and from a small boutique in the village, he bought me a $300 little black dress, the undergarments that I needed, shoes, and rented me a fur (it was March, and all I had with me was a down jacket.) When he wanted something, he never asked the price – just said, “that one is perfect” and paid for it. On the other hand, he could haggle on Canal St. or with a printing supplier with the best of them.

He lived on an entire floor of the building at W. 26th and 6th Ave, in a loft he’d renovated himself. There was a door through the bedroom closet into his media company offices. He bought full health insurance plans for his five employees and himself. He’d had testicular cancer in his 20s, discovered when, during his loft renovation, he sliced his pinky and had to have stitches at St. Lukes. In their routine exam, they found a lump. Radiation and the testicle removal, and he was done with cancer. And he was continually mystified that the guy at the deli and the flower guy knew me by name, but never greeted him at all although he’d lived in the neighborhood nearly 20 years.

We were together, long-distance, for just about three years before I broke it off. Joseph’s concept of infidelity was “if she doesn’t find out about it, it didn’t happen.” My concept differed. We had an open relationship, and it wasn’t so much that there was another woman … but that he’d lied to me about it. I took the “if you’re going to lie about this, what else are you going to lie about?” In the beginning, I’d told him if he ever lied to me, it was over. He lied. I caught him. Millionaire or not, it was over.

When we ran into each other in 2006, I told him that I had stage IV rectal cancer. He was surprised, and concerned, and he wished me well. He was living in Florida, he said – on a horse breeding farm with a new woman who had surrounded him with animals and a slower pace of life. He’d had what he called a “cardiac event” in 2005, and felt that he was learning to live a more relaxed, less frantic life.

Two days ago, I got an email from his old email address, with a link to something that was clearly a commercial website. When I saw COMPELLERONE@aol.com, I remembered the buttons he’d distributed at a music conference we’d attending in San Francisco – Compel, Excite, Dominate. They were three words that described his mixer – and Joseph – to a tee.

I sent a response: Joseph, I think your email’s been hacked. I hope that you’re well. P.

Yesterday I received this reply: This is Joseph;s (sic) friend Elaine. His acct has been hacked. I am fixing it now. Unfortunately, he is not well. He passed almost 4 years ago.

Somehow, although I knew that this could happen (Joseph wasn’t in the best physical shape), I didn’t really expect that response. It shook me a bit…maybe more than I wanted to admit. The possible but unexpected is always the thing that throws me the most. I spent the day taking serial naps, broken only by taking the dogs out for walks.

But today, I shook it off, and took the girls to the dog park to enjoy the brilliant sunny fall day. Tomorrow, I’m going to try to make recurrent support group for the first time in almost six weeks. Some people weren’t doing so well six weeks ago – Joanne, who introduced me to the group, for one. I’m not really up for another unexpected expected passage of time.

But avoiding group isn’t going to keep bad things and the natural course of life from happening. It’s time to go back to group, to get the support I need – and it’s time to be in the moment, celebrate lives well lived and salute the passing of time.

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