Pat (Gaelen2) passed away 7/17/12

Pat Steer (or Gaelen2) to many of you passed away 7/17/2012 after battling Stage IV rectal cancer for over 8 years.  I drafted this post almost two years ago, but could never really bring myself to publishing it as her last post.

Words were precious to Pat and mine seem so small when compared to hers. As I prepared her eulogy, I was touch by the outpouring of support and sympathy we received from all over the globe, from people see knew, some she had known but never met except through technology and other who were total strangers.

I used this story as tribute to how Pat touched so many lives during Pat’s eulogy. http://timetoconsiderthelilies.com/2012/07/19/no-rest-for-cancer-rest-in-peace-pat-steer/

The fact that my sister could have such an impact on a people she never even met was a testament to who Pat was. She’ll be missed, but her words and stories will live on.

Enjoying a beautiful city with a beautiful friend – without ever leaving my bed

Carruaje de época en la Feria de Abril de Sevi...

Carruaje de época en la Feria de Abril de Sevilla (año 2008). (Photo credit: Wikipedia)

Several years ago on Colon Talk, the discussion forum at the Colon Club, I met another stage IV survivor who used the screen name Azahar. Shawn, a Canadian expat, lived in Sevilla, Spain, and we spent a lot of time discussing our cancers and our treatments.

One of Shawn’s businesses is Sevilla Tapas, where she provides personalized guided tapas tours to visitors to Seville. I wanted to visit Seville in the worst way – but since I couldn’t get it into my treatment schedule, I eagerly followed the photos she tweeted and Facebooked – scenes of Seville and surrounding towns, and some of the most beautiful small plates. On chemo days, when nothing would tempt me to eat, Shawn’s daily tapas shots teased me with appetizing beauty. She even helped me with my own food shots – which were scarily amateur by comparison.

At the beginning of the month, I guest-blogged “No more room in the bucket” for the folks at Fight Colorectal Cancer. And in that guest blog, Shawn told me that she’d completed a virtual Seville and tapas tour with me.

I was speechless when I first saw the video. In fact, it took me several days to watch the whole 20 minute video, because I kept crying and having to shut it down. I couldn’t believe that Shawn put the tour together, that so many others were also involved, that waiters were saying hello to me in Spanish and that chefs were preparing dishes for a woman they’d never met who was enjoying their kindness from 2400 miles away (or however far away Seville is from Syracuse.)

We meet a lot of people on our cancer journey…sometimes IRL (in real life) and sometimes only in the virtual world. IRL is always better – but virtual meetings and virtual friendships can also be very strong.

So gracias, mi amiga – I can never repay you for the feelings I’ve enjoyed while knowing you. And now, I can watch “Pat in Sevilla” from start to finish – and imagine what it would have been like to meet you, and REALLY tour your beautiful city. Gracias – seems so inadequate, and yet it’s the warmest word for what I feel for you.

 

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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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And the cancer patient learning process continues

About 10 days ago, with the agreement of my doctors here in town and the begrudging acceptance of my NYC oncologist, I decided that I am no longer strong enough for chemo and have chosen best supportive care, pain management and to begin interviews with hospice. The learning experience that has followed making that decision has, I confess, thrown me for a loop.

There are some – friends, family, other patients – who have asked me if it’s too soon, if I was just feeling depressed at my slow recovery from the blocked kidney and nephrostomy tube placement. Now, 10 days after making the decision, I can say maybe. But I do know that my decision to stop chemo was the right one, and as Dr. Personality so directly pointed out, as soon as I stop chemo, the tumors will grow and my pain will increase. I know that without the kidney issues, I might have several months left – but kidney blockages added to the mix are game-changers that mean I’m at much higher risk and could deteriorate much faster with less notice.

What I wasn’t prepared for at this point in my dance with cancer is to get the impression from the hospice facility I’d very carefully researched that I’m not quite sick enough. Why? Because I don’t fit their patient profile of someone who is within days or hours of end-of-life.

Although this is a well-respected, carefully chosen local facility, they apparently prefer to concentrate on patients who are in immediate danger of dying, rather than patients who know they are out of options and want to live out their days surrounded by responsible health care and professional caregivers.

If I wanted to die in my living room and had family and friends to take care of me 24/7, I’d have fit their more popular model of caregiving. But if I want 24/7 care provided by a facility, and I’m not due to die within a couple of days, it looks like I will have to consider extended care, nursing home type facilities. Not what I wanted. Not what I planned for. It doesn’t matter that I have good insurance and private money.

But apparently, depending on the services provided by hospice groups in your location, dying with dignity isn’t about what you prefer as much as it is about what hospice prefers to provide.

And the learning experience continues.

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The movies that draw you in…

Some movies are the ones that draw you in, make you change the channel when you see them in the line-up. You know you want to see them even if they’ve already started.

My “suck me in” movies, in no particular order, include these. This is by no means an exhaustive list, but the movies on it will make me tune in, every time.

  • Stepmom
  • Apollo 13
  • Independence Day
  • Die Hard
  • Armageddon
  • Twister
  • Steel Magnolias
  • Pretty Woman
  • Tequila Sunrise (don’t judge…)
  • The River
  • August Rush
  • The Competition
  • Continental Divide

But today, when I saw Stepmom in the channel lineup, I couldn’t do it. It hadn’t even started yet, which usually guarantees I’ll be watching that movie! Instead I opted for Bobby Deen’s new show, Not My Mama’s Meals.

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