Tag Archive for cancer

Which little things make your treatments bearable?

January 6, 2010 cancer, survivorship 2 comments

Kairol Rosenthal, author of Everything Changes, blogged today about this question:

Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

And then she asked this question, and made this request:

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

If  20 people give us their list of five, we’ll have over 100 helpful hints for the next person who is in our shoes.  So, forward a link to this post to other friends in the cancer community and ask them to contribute their top five too.

My five (well, okay, seven) were:

- my cell phone
 – my PDA (to take notes, play games, keep my contact numbers at my fingertips)
- (already mentioned and absolutely essential!) my iPod nano loaded with audiobooks and great playlists. In fact, I splurged on my first-ever iPod in 2004 when dx’d, to help me get through the 7-10 hour long Folfox/Avastin infusions.
- a very small backpack to keep everything close to my bed hanging off the bed rail
- an extension cord – I think it was around 6 or 9ft. long. Compact, but just enough to be able to bring electricity from the wall plugs to my bed, so that i could plug in all those small electrics ;)
- party straws: a friend sent me to MSKCC with party straws – neon colored bendable straws with those little drink umbrellas built into some of them and pink flamingos on the others. Like the candy and chocolates, every doc and nurse who saw one of those little party umbrella straws sticking out of my plastic cup of chipped ice smiled, and that definitely eased the tension of 27 days in the hospital (they just never got old)
- slide-on shoes (my crocs or birkenstocks)

for treatments and post-op, I added:
- scrubs (elastic or tie waist pants, lotsa pockets, loose-fitting and easy care)
- button-front henley tees, short and long sleeves for any season. Henleys made it easy to access my port, hook up my infusion lines and even place ECG patches – and the variable button fronts meant I could maintain the illusion of modesty. During cold-weather treatment, I often wore a Henley tee under a scrub top for the ultimate easy-access but layered warm outfit.

I also mentioned that I found after the first hospital stay that I didn’t want or need any personal clothes in the hospital to wear. For one thing, I was far too bloated by the surgery/anesthesia to wear most of my clothes…and had no one and no place to do personal laundry since I was in a hospital 350 miles from home. I realized that the only things I really wanted were some completely disinfectable supportive shoes (hello, crocs!) and some very loose-fitting clean clothes to wear home (hello, scrubs!)

What five things helped you get through treatments and/or hospital stays? Feel free to leave a comment on this post (I’ll forward them to Kairol) or visit Kairol’s blog and comment here.

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Cancer screening guidelines: What cost prevention?

November 21, 2009 cancer, research, survivorship 3 comments
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 cancer, survivorship 11 comments
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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Reality checks come in threes

November 8, 2009 survivorship 4 comments
An example of early-style Staunton Chess Set

Image via Wikipedia

When the reality (and eventual finality) of a stage IV diagnosis comes calling, it just keeps ringing the doorbell.

I started my morning by reading Kairol Rosenthal’s latest post on Everything Changes – where she asked readers if cancer had ever intruded into their private spaces. That led me to Alli’s blog, RedHeaded Bald Chic, where she wrote about the heart-breaking realization that she can no longer safely care for herself. She is sacrificing her independence to the progression of her ovarian cancer. She’s moving back into her parents’ home, into the bedroom she had as a girl, until her cancer means she can no longer climb stairs and needs the reality of a hospital bed on the first floor. Check.

Next, I checked forums – on Colon Talk someone let us know there was a new entry in Joe’s blog, where he’d left an update about his wife L, a stage IV rectal cancer patient with advanced mets who went into hospice care a couple weeks ago. L’s body systems are shutting down, but she is still in terrible pain and raging against dying. The hospice workers suggested that her inability to accept her reality, to accept that her body can’t keep up with her desire to live beyond her diagnosis is making it harder to control her pain, making these last days more difficult. Fighting reality is making it harder for them to help her. Check.

Finally, I popped into MyCRCconnections – although I’m a CCA buddy, I can’t access that site at work so I only read the whole board on the weekends. Catching up, I saw a thread started two days ago by a woman who has decided to stop chemo until after the first of the year. Her latest chemo regimen (her third) is taking more out of her than she can handle, more bad days than good days. She wants to spend the holidays with her family and take some vacation time with her husband and she wants to do those things away from the haze of chemo. Her doctors have told her that, since she’s out of drugs, they have no other options for treatments. If she progresses on this one as she has on all of the previous chemos, then at best she’ll have a few months. She’s struggling with her wish to have as much time with her family as possible.

Her thread was maybe the hardest of the reality checks. Two years and change ago, she found TheSemiColonClub, a yahoo! group I moderate for colorectal cancer survivors – newly diagnosed and confused, searching for reasons why and desperately convinced that she would do the chemo for her stage III diagnosis and be able to continue her life as if she’d never had cancer. Was it diet that did her in? Lack of exercise? She resolved to do both. I remember once she asked about her chances for progressing to stage IV, and we talked about the stats, about the fact that not everyone in stage IV dies the year they’re diagnosed, and not everyone is stage IV when they die.

Then she had the first recurrence, and the second. Now she’s out of drugs, and almost out of choices – and staring hard at reality. Check.

As every scan approaches, I check in with the reality that cancer could come back, that my day-to-day reality of remission could end at any moment and move into the reality of a cancer patient dealing with active disease – again. Every scan could color that picture in more clearly, making it easier to see the pitfalls and the rough road ahead. I can’t think about the course of the road every minute, but I’m always traveling it, and the reality checks in the world around me only make the road more certain. Because despite the work and the plans and the projects, the training classes and the dog shows, reality can change in a heartbeat. It’s unemotional, unpredictable, impartial, unforgiving, intolerant, impatient.

Reality.

Check.

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Every step makes a difference!

November 1, 2009 cancer, research, survivorship, the 'net 10 comments

A few weeks ago, in an effort to improve my blogs I joined www.problogger.com. I know that the tips and tricks I’ve picked up so far are improving my blogging – who knows, maybe someday I’ll even move my blog(s) to their own domains!

One of the things I really enjoy about the blogging community is that I’m always finding opportunities where my blogging can make a difference. I’ve blogged here to support Yoga Bear and tweeted to support Cancer and Careers – two organizations who give direct, real-time support to cancer survivors, support which makes their days easier. The most recent opportunity was a call for bloggers to help compile an ebook designed to benefit the Susan G. Komen Foundation and raise funds and awareness for breast cancer research and support.

Yeah – I know. I don’t have breast cancer; I have rectal cancer…and we have our own awareness and funding issues. But at the end of the day, I’m a woman. I have breasts. I have cousins and an aunt who’ve had breast cancer, and one of my cousins died of recurrent BC. I work in pre-clinical research, helping to make cancer drugs – and in the vivarium, drugs don’t wear single-color awarenss ribbons. Drugs that work on some kinds of cancer often become candidates for treatment regimens in other types – and every step forward makes a difference for all types of cancers.

I submitted one of my favorite posts, “The (reluctant) cancer warrior,” — and I’m proud to announce that it was accepted and appears in the Blog4Cause ebook produced by Lance Ekum (@lance02) and Joanna Sutter (@joannasutter), authors of the Journey of Life and Fitness & Spice blogs, respectively.

Every donation, large and small, to the Komen Foundation from the targeted Blog4Cause page gives the donor a download key to the ebook Ekum and Sutter compiled. Even more important, the ebook puts survivors’ perspectives in the hands of even more people. Through this effort, awareness about and understanding of living with cancer will reach a new audience. I’m very proud to have been accepted in Blog4Cause’s effort – and very happy that by doing something I enjoy, I can do a little good.

Ekum and Sutter’s effort also stirred up some sleeping marketing and PR skills, has me thinking that there’s ebook potential out here to raise year-round awareness about colorectal cancer.

Bloggers and friends – would you be up for a similar effort targeted as a colorectal cancer awareness/fund-raising effort? Take a look at your best posts (or write up a new one) and let me know!

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