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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

Image by DavidDMuir via Flickr

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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Has anyone seen my mind? November 18, 2009

Posted by PAS in cancer, survivorship.
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The human brain

Image via Wikipedia

I was reading the NYTimes Well Blog for Nov. 17, where Kairol Rosenthal of Everything Changes guest-posted about the frustration that comes when cancer patients have to deal with fogged brains altered by radiation, chemo and the long haul that is modern cancer treatment.

So often, survivors who are experiencing loss of focus and chemo-brain hear comments like “You think YOU’RE forgetful? Last week I couldn’t find my car in the parking lot.” My favorite well-meaning comment is “You couldn’t remember why you came into the room? That happens to everyone!” I swallow the reply I want to snap back: “Oh, really? Everyone forgets why they’ve walked into every room, over and over and over again all day long?” Instead, I nod, or shake my head, or smile weakly and try to move the conversation somewhere else.

The person who is trying to make me feel better by promising that forgetting things happens to everyone has no idea what it’s like to lose the details of my life. They may be momentarily disoriented when they forget where in the two-acre Wegmans parking lot they’ve parked; I freeze and dissolve in panic. Because that frozen moment is so paralyzing, I try to park in the same general area every time, go in the same door, make the same circuit around the supermarket. Routine is not just my friend; it’s one of many finely honed coping mechanisms on which I depend to keep some shreds of normal in my day.

But cancer wasn’t my first experience with the sensation of misplacing my mind. In 2000, I had an intracerebral hemorrhage – and the after-effects of that illness are things I still feel, things with which I’d learned to cope but which were worsened by chemo and treatment. Two years after the stroke, I had a neuropsychological exam (NPE) – a face-to-face IQ test on steroids that is conducted in three or four appointments spread over two weeks. That test was brutal – both the experience, and the results, which showed me both where I was still ‘stronger than average’ as well as where I was now weaker. Most shocking, to me, is that in areas where I felt I was clearly having difficulty, I was till rated ‘stronger than average.’ Clearly, I still had some skills, but my altered brain and self-image had a tough time recognizing those skills and using them to compensate for new weaknesses.

I had gotten insurance approval for the NPE after struggling for two years with sudden emotional shifts, flooding, inability to handle crowded or noisy places, difficulty tolerating stress, difficulty focusing and concentration issues. These and other post-stroke side-effects made me self-conscious about my skills as a teacher and my abilities as a research supervisor. I stopped volunteering as a medic for a few years after the stroke, telling the emergency team that I was no longer physically up to the job. The real story was that I was terrified that I’d lose focus during an emergency and forget something critical, compromising a patient.

With the help of a terrific counselor, I was able to devise coping skills that let me get through the day with a minimum of ‘visible’ effort. I cribbed some of them from an amazing account of traumatic brain injury (TBI) rehabilitation written by Claudia Osborn, MD. Out for an evening bike ride, Osborn was hit by a car – but it took several months before her TBI was correctly assessed. She began rehab, and as I read her story, “Over My Head,” I was struck by how similar her TBI side effects were to my own post-stroke issues. I researched Osborn’s rehab, TBI and its cousin acquired brain injury, discussed an NPE with my counselor and doctors, and the rest was history.

Then I got cancer. And four months into cancer, I had two smaller hemorrhagic strokes. I was terrified to continue chemo, terrified to stop it. Surgery for liver metastases was now off the table. I was officially downgraded from surgical candidate to palliative care, and wouldn’t be reconsidered for surgery until I’d logged six more months of brain recovery. My oncologist listened and questioned me as I explained to him how scary it was to have to assess and evalute my escalating symptoms and side effects after each treatment, explaining how the side effects of stroke and of chemo are often exactly the same. Somehow I needed to learn how to tell the difference, to know when to call the oncologist’s office, when to call 911, and when to do a round of finger exercises, take a breath and try to relax. When to accept that it was just the chemo stealing a few more brain cells – and not an actual stroke blowing them out of commission.

But at the end of the day, five chemos past that summer of 2004, I’m not sure which was worse – waking up from a stroke unable to recognize the numbers on the telephone, or seeing the open refrigerator door and realizing that I’d left it open again (how long? oops, maybe all night!) At the end of the day, the brain cells are still missing in action, and here I am, wondering in which storage room I have accidentally checked my brain

I still swallow, hard, when someone tells me “Oh, hey, if this is one of your bad days, give it to me. You’re sharper on a bad day than most people are on a good day.”

Maybe. But it’s hard to believe that when I usually feel like I’m running as fast as I can just to stay in place.

Have you noticed that you have trouble focusing, concentrating or remembering things since your cancer treatment? Does it happen often, or only once in awhile? How are you coping with these slips?

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