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On the move… November 30, 2009

Posted by PAS in the 'net, Uncategorized.
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*Genehmigung: {{User:-jha-/Genehmigung}} *Moti...

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Those of you who’ve been reading Life Out Loud for awhile might have been expecting a new post today. But this weekend instead of writing posts, I was building websites – movin’ on up to self-hosted blogs at my own domains. These include include patsteer.com, which will be the new home of Life Out Loud and my freelance writing projects; one for my food blog Kitchen Jam which is in development here; and one for Dog Trainer’s Log, evolving here.

Each of these sites is still, to some extent, ‘under construction’ – I’ve planned some offical ‘launch’ activities later this month. Meanwhile, I’ll be putting up new posts on the new sites, tweaking, re-arranging the virtual furniture. When the move is complete, your links, bookmarks and RSS feeds to my WP.com blogs will re-direct you automatically to each blog’s new home on its own domain. Until then, wish me luck as I work to make 30 years of writing and 10 years of tech training pay off. ;)

Please come by and check out my new online digs. Look for some special December blog-warming projects: “The 12 Jams of Christmas” at Kitchen Jam and a new training series for the Divine Miss M. at Dog Trainer’s Log. And adjust your dial to stay tuned for plenty of the same old me (working under my real name now!) at Life Out Loud.

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The (un)truths about colostomy November 23, 2009

Posted by PAS in survivorship.
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You’ll be able to eat anything you want (um, not so much – individuals handle some foods very differently.)

You’ll be able to wear the same clothes you’ve always worn (yes, as long as it’s not skin tight, doesn’t bind across the waist or abdomen, and is roomy enough to permit the bag to expand as needed.)

You’ll be able to do all of the thing you did before the ostomy (yes, unless you develop a peristomal or abdominal hernia – then you’ll need to be careful about lifting.)

Nothing will change in your life (some things will change, but all change isn’t automatically bad.)

You won’t be attractive to anyone with a bag hanging off your side (you are only as unattractive as you act or feel.)

Everyone will know that you have an ostomy (nobody seems to know I have a colostomy unless I tell them.)

Ostomies stink (only when you don’t care for your ostomy properly!)

Ostomies are dirty (we all have bowel movements; an ostomy isn’t any more dirty than other ways of moving your bowels, and far cleaner than some!)

Ostomies are the worst possible surgery you could have (hmm – no. I can think of several body parts I’d be more upset about losing than part of my bowel!)

Ostomies are life-altering procedures (yes, they save lives and make it possible for people to live normal lives every day.)

 

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Cancer screening guidelines: What cost prevention? November 21, 2009

Posted by PAS in cancer, research, survivorship.
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337/365: The Big Money

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The cancer survivors world has been twisting around on itself this week, as new screening recommendations were released for breast cancer (no need for annual mammograms until age 50, breast self-exams ineffective, screenings from age 40-49 yield too many false positives) and cervical cancer (moving Pap smears out to every two years, or every three years, depending on health and history.)

I’m not sure how I feel about the science behind these recommendations. I’m all about science – but I’m also all about prevention in health care, and body-awareness as a patient. I have a tough time wrapping my head around the idea that in the two areas where we’ve made the most progress at getting the public to embrace self-exams and insurance companies to embrace preventative screenings, none of that prevention has done enough good to merit continuing the practices. I’m from the era of ‘Our Bodies, Our Selves’ and I’ve done breast self-exams (BSEs) for 35+ years. Now I’m hearing that none of that was (necessarily) worth my time. Huh?

Recently, in her blog Everything Changes, Kairol Rosenthal asked, “Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

I think we can – I think we must. And this is how I responded.

———

Yes – and this needs to happen not just for breast cancer, or cervical cancer (which took a screening recommendation hit today, too) but for ALL cancers.

We not only CAN move research beyond anecdotal stories about detection and diagnosis – we MUST move to accomplish that research.

I agree that decisions are based on (mostly) facts and science and research. And I submit, with all due respect to the learned members of the USPSTF, that it’s entirely possible that while their research is adequate on its face for the question(s) they considered, they asked the WRONG questions.

The questions are not only whether early screenings prevent death, or even whether they cause harm. Those are important questions, but not the only questions that need to be asked. Researchers need to ask whether early screening actually discovers disease in a lower, more easily treatable stage than screenings at a later age. They need to ask if that number is rising (in several cancers, it is.) They need to ask whether early, non-invasive screenings like BSE, mammograms, and other self-exams, can contribute to a heightened body-awareness that helps people become better and more active, informed participants in their health care. They need to ask if it’s more cost-effective to provide preventative care to the largest population possible or more cost-effective to stick with the current model (spending hundreds of thousands of dollars to fight fires that could have been prevented at lower cost.)

We are mired deep in a US healthcare system which spends exponentially more money on treatments (putting out fires) than it spends on preventing those fires in the first place, than it spends on making routine well-person checks available and affordable. The causes of readily available screening and early detection for any cancer are very close to my heart – as well as other areas of my anatomy.

I was considered high-risk for breast cancer (paternal aunt and 3 of her 4 daughters dx’d with BC before age 40; one cousin dead of recurrent BC by age 50; one of her 4 daughters a prophylactic mastectomy patient.) I was considered high-risk for cervical cancer after an HPV exposure in my late 30s. I was aggressively screened for both BC and cervical cancer – who knew the cancer card I’d draw would be stage IV rectal cancer diagnosis at age 48, two years before the recommended screening age and with a less than 15% 5-yr survival rate?

Preventable, treatable and beatable in the context of five chemo regimens, three surgeries and 5+ years fighting for my life is relevant only in the context of what SHOULD have been done! CRC ain’t so treatable, preventable or beatable when your doc finds an 80% tumor load in your liver.

I’m an anecdote, all right, but I’m an anecdote who’s paid attention to all of the facts and figures. My treatments and surgeries to date have cost over $300K, compared to what it would have cost to give me annual screening colonoscopies from age 40 – $8K, at today’s prices. That’s pretty simple math to do, and to factor by the number of late-stage (III, IV) patients diagnosed with CRC this year. As with breast cancer, THAT is the math that needs to be done. We need to ask THOSE questions about early screening.

And until we have the answers to those un-asked questions about the success of prevention, then I’d much rather deal with a false positive and a biopsy that turns out to be negative. It would be infinitely preferable to the treatment required after late detection of an advanced cancer.

Been there, done that, have the ostomy supplies to prove it. ;)

————-

The new science is interesting, and I am slowly reading through it. But I think that I’ll be continuing my current screening procedures, based on my personal experience, and I’ll continue to advocate for early detection, prevention and body self-awareness.

And if you’re not reading “Everything Changes,” do check out Kairol’s blog.

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