Got your “hearing aid”?: Try better cancer caregiving by deploying podcasts!

Are you “keeping your ears open” to utilizing a relatively recent resource in cancer caregiving?


Did you hear it yet?

Specifically, have you hunted, loaded, and listened to free MP3-format cancer-content talks, interviews, and seminar panels? They’re offered over the World Wide Web portion of the global public Internet.

Cancer wisdom, working without written words: does this idea sound dissonant to you? Does this suggestion fall flat for you?

There are several “sound” reasons for seeking out cancer-specific podcasts:

1. You can’t beat the price: nearly all are offered free.

2. Easy access: most computers, most portable music players, and some “personal digital assistants” and cellphones have MP3 sound-play functions. And any laptop with wireless modem can grab aural aid without connecting a cable into a wall.

3. Sharing: Remember that Christmas song “/Can You Hear What I Hear?/” (And other faith traditions presumably offer similar sung savvy.) Do you know that new saying “Play it forward,” which advocates sharing helpful information or resources?

Your cancer-patient loved one(s), other caregivers, and patient family members can benefit by either your alerting them to, or actually delivering to them, “goodie” podcasts. Email them either (i) a good cancer-topic (or other) podcast that you’ve found (i.e., as an attachment to your email) or (ii) the specific Web location where they can listen to it or download it (i.e., the particular Web “page,” also known as the “URL” [for “Universal Resource Locator,” in geek-speak]).

(The latter option can be better for longer recordings, which usually generate bigger [so-called “fatter”] digital files. Emailing an attached big MP3 file may be precluded or slowly processed by some email service providers that are free or otherwise bandwidth-rationing.)

4. Time savings: You can combine commuting, cooking, chores, or other tasks with learning by ear. Why not reduce your consumption of ads on radio or television by harvesting further cancer knowledge?

5. Added absorption (i.e., better understanding and retention), anyone?: Educators, cognitive scientists, and others assert that individuals vary in their “learning style.” The “neuro-linguistic programming” niche of psychology asserts that people each prefer one of the five senses. Maybe you or your cancer contacts will digest, “grok,” or appreciate communication more or faster via ear than eye?

6. New paths and possibilities. Maybe a podcast will alert you to current or upcoming clinical trials and relevant research. We found our current lead oncologist via mining MP3s many months after a specialty-topic cancer conference concluded.

So, how do you begin? Where can I hear more?


The writer’s recent hearing enhancement initiative, which pleases his cancer-patient loved one when it’s actually used!

If you’ve “heard” my “why” idea, let’s go to “how” and “where.” So where do I get these golden audio nuggets?

1. “Word of mouth” is always a useful knowledge-gathering strategy. Ask smart, studied, veteran cancer patients, caregivers and Internet-savvy medical professionals for recommendations. (Have you chatted up your hospital librarian lately?)

2. “Work the Web.” Googling a -combination- of terms generates Web sites containing each of your interest terms (or, for very narrow/complex searches, most or many). Use the all-capital-letters word “and” command (i.e., “AND”) to instruct the search engine that you only want sites and content that contain -each- of your specified words and/or phrases. Specify the particular type and stage of cancer that is your interest. For example, Googling “MP3 AND podcast AND breast cancer” AND metastatic” can help you narrow your results (“hits”) to more-likely-useful stuff. In your Web-search, substitute “stage __” for “metastatic” and your cancer type for “breast cancer” in the prior example “search string.” You might add the type of treatment, hospital, diagnosis, molecular term, or other points you’re researching. (In my family, helpful breast cancer content MP3s from www.LBBC.org, www.MBCnetwork.org, [for those braving highly technical, stylized researcher-talk] www.SABCS.org, and other sites have been godsends.)

3. Study your favorite Web site’s site map, content, and navigation. Many organizations, businesses, and universities are adding podcasts to their prior text-only Web sites. If you’ve already found good word information on some sites, go back periodically and see if podcasts are a later-added feature there.

Yes, some events are recorded without the expertise and equipment of an experienced audio engineer, resulting in some hard-to-hear parts. That’s the purpose of the volume control on your podplayer or (for those with hearing aids inside the ear) computer speakers.

Any downside? So far, I’ve only identified one small concern. Some podcasts are produced and distributed without a clear, initial statement of the date, context, and speaker(s). It’s best to know when a particular cancer podcast was recorded, because future research, trials, and peer analysis might (and hopefully will) yield new, different data, experiments, or treatments, possibly render some portion of the content misleading or obsolete. So I modify the file name of a podcast after downloading it, to note the date, speaker(s), sponsor, URL, and other identifying information, before sharing or storing it.*

Here’s hoping hearing modern digital content will be music to your cancer-caregiver ears.


* There are copyright law compliance concerns with digitally recorded works (e.g., music and movies). This post only addresses verbal, medical content, usually released by medical associations, cancer education organizations, universities, and other non-profits.

How does your patient get up and out of that hole of cancer?

Cancer is low-down and dirty. It can crumble away your certainty and expectations. It’s scary – like being stuck in a clay pit clawed out of Mother Earth. How can you help your cancer patient loved one dig out?

By finding “bucket holes.”

What?

Your eyes, ears, mind, and mouth can be a shovel against caving in to cancer.

America’s medical services can be disjointed when deployed to help long-term, serious illness. As our internist (the former elected President of our city’s trade association of physicians) advised, “Our country doesn’t have a health care system; it has a health care market. And what gets done is what’s there’s a market for and gets paid.”

What, no “system” to health care? Does that mean there may be a hole in my patient’s bucket? An overlooked aperture where needed “water” – that is, important information, documents, or communications – may leak out?


New Orleans stalwart r&b recording artist Eddie Bo reminded
all souls to be mindful and alert: “/Better Check Your Bucket/.”

If there are leaky, rusty spots in your patient’s path, then needed time, money, data, or other resources definitely might spill out of that space. How can you serve?

A cancer-caregiver can be a process analyst, in serving as an advocate. You can moonlight as a quality-control engineer. By adopting an attitude of part-time volunteer oversights-ombudsperson, you can shine a better light on the accuracy of the information created and shared by your loved one’s always-diverse, always-dispersed medical team.

You don’t have an Industrial Engineering degree. You needn’t claim certification in “Six Sigma” (the business-process methodology developed and popularized by uber-corporation G.E.), or a medical degree.

But you can watch, listen, ask questions, take notes, and whenever needed challenge, clarify, and even escalate, to get oversight on problem situations.

For example, what if an overworked nurse overlooks a file notation “Do not take blood pressure from right arm” (per lymphedema risks, after a mastectomy)? You’re not a doctor, but you can (and should!) be a healer, by halting an unnecessary error in a busy nurse’s work day: holler “Hold it!” when you see the wrong limb grabbed!

And if your patient gets care in more than one city or setting, do the new doctors have access to other, older medical records, from the prior vendor and venue? Can’t you ad-lib as a part-time medical records specialist, by building and bringing a complete, tabbed binder of prior medical reports, images, test results, and other documents, to help clear a cleaner path to better health?

Today I watched a friendly, polite, hard-working, and well-meaning floor nurse, striving to handle an unexpected complication, corrected by a specialist veteran nurse, in visiting from another department. All at a world-class facility, when delivering my family member’s long-planned, costly experimental care! What did I do (after feeling shock)? I asked the floor nurse to call the specialist in the other, absent department to come review the situation. She reflexively assured “non-medical” me that all was “under control” and “not to worry.” But I was firm: I said: “No, please call them, right now; you and I both know there’s a deadline deploying this expensive new medication; coordinating with them is necessary, very, very soon.” She disappeared and did so. And then just 10 minutes later the just-arriving veteran physician from another skyscraper suddenly appeared in our hospital room, took charge, and clarified “the rules,” overruling the guru veteran nurse. Later, my family member received the needed medication, after layperson-aided teamwork overcame the catheter confusion.


Medication flows to my patient, only after some caregiver contribution to the flow of medical professionals' communications.

It’s not just your patient with internal problems. It’s every organization and hard-working professional. So you’ve got a role in this path.

/There’s A Hole In Your Bucket/
/And It Goes Right Through/
/Said I, There’s A Hole/
/In The Donut Too/.

“First, place oxygen mask over -your- face, and -only then- over your child’s.”

How, much self-care should cancer caregivers get? And how?


Does cancer caregiving sometimes feel "sink or swim" scary?

This week’s Hudson River aircraft crash-landing reminds us of the required flight safety announcement for passengers traveling with children: in the event of emergency, “First, place oxygen mask over your face, and only then over your child’s.” Is that us?

Why should you peel away some prioritization from the consuming challenge of planning and delivering support for your cancer-patient partner? (But, it’s not me with the disease!) Who cares about your energy, joy, or peace? When your priority while traveling the cancer journey is selflessly nurturing your loved one, how can one think about self-nurture?

Why? – because burn-out is bad, for both your cancer patient and you. Who cares? – I bet your care-recipient does. How? – “it depends.”

Why? Because you’ll yield better nurture to your loved one? Because you’ll last longer in the cancer-care marathon? Because you don’t have another choice, but to pause and re-gather your personal resources? All of the above?

Among the many mental surprises I’ve received in my un-sought role as cancer concierge, is admonitions from cancer-veteran friends who’ve previously trod the same path. They’ve not asked, but demanded: “But what’re you doing to take care of yourself?”

How? In my case, cancer-coping has included new sources of music.*

How else? "It depends." What works for you? Maybe you want walks in nature. For me, joy from jumping into the spring-fed, chlorine-free waters of Austin’s urban-jewel pools Barton Springs Pool** and Deep Eddy Pool** have supplied me my weekly dosage of aquatic endorphins (called “endolphins” in my household).


Need nature nurture?

Clearly, cancer’s emergence into your world mandates measures to assure that you get your personal forms of “oxygen” (whatever they might be).

So, don’t be numb to your nurture-needs. Ask yourself (and perhaps also wise-ones who know you), what do I want and need? And then take action to supply your nature, music, sanity, energy, sanctity, or other requirements, as indirect enablement of your caregiving quest.


[Photograph of Oregon coastline courtesy and copyright www.larrybugen.com.]

* Thank you for your free, Internet-delivered stream, ye uber-jazz, uber-soul, and best-local-radio-station on the planet source www.WWOZ.org of New Orleans. Thanks for your Internet-only mostly-jazz 3d-beacon “KUT3,” oh ye www.KUT.org of Austin.

** www.sosalliance.org and www.deepeddy.org

how cancer-caregivers can help construct more liveable cancer

Mightn't -metaphor- make the mess of metastasis more meaningful?

Say what?

Comprehending the components of cancer is hard. Conquering the confusion requires delving into the murky dark deep of biology, genetics, clinical medicine, medical economics, psychology, maybe nutrition, and sometimes medical research processes. Can't "cancierges" make cancer-coping communication (and courage) come more easily for their loved one?

Yes. How? With a tool that we all -already- deploy: metaphors and analogies.

For example, building construction.

Last week my cancer-challenged kin called her upcoming radiation regime "spot-welding." Renaming external beam radiation with a better-understood, previously-observed, mentally accessible repair process, shrinks the bogeyman. Just like the zapping should shrink her T9 vertebra and femur tumors.

Consider how construction resembles cancer care. The oncologist can be viewed as a specialist architect, responsible for remediation of a beloved, but troubled, usually aging structure. Surgeons are carpenters, crafting and carving carefully-measured piece-parts and their connections. The structural engineers who calculate stress burdens, weight loads, and other amalgams of architectural math and physics, where are they? They're beavering in the back rooms, working as medical physicists, handling dosimetry calculations, delivered as key parameters to radiation oncologists.


above: Got your hard-hat on, to allow you on the heavy-lifting, occasional-accidents site of cancer-remediation body-building?

Presumably radiologists want more respect than being renamed termite inspectors. Yes, cardiologists merit more consideration than hearing themselves labeled "HVAC subcontractors." Best avoid the obvious linkage of urologists and plumbers!

But there can be respect and appreciation, in calling cancer care another form of fixing fading buildings. If "the body is a temple," then it's respectful to re-name cancer medical professionals "specialist church architects."

And cancer caregivers can be the architects of patient confidence, of their loved ones living more comfortably in the complex but durable construct of their bodies.


above: Once an old moviehouse, now an overhauled, bustling natural foods restaurant. To what heights will you aspire in your cancer-caregiving?

P.S.: All of us over 50, don't forget your plumbing system quality check (how not to say "colonoscopy")? And adult women, don't delay those regular furnace filter changes, periodic repainting, and life-saving mammograms and self-exams!

Is even healthy life radioactive? What to do?

Radiation treatment is a time-proven resource in the cancer-care toolbox of oncologists. But it can be fearful for cancer patients and their families. Radiation-delivery machines and medicine containers are scary. Haven't we all heard of Chernobyl? And didn't most oldsters see that meltdown-scenario movie "The China Syndrome"?


above: Want some flesh-fries in your body with that healing physics?

Today is the Buddha's birthday. This day is recognized by many branches of that faith as the anniversary of when the religion's founder obtained enlightenment. Can cancer patients and their caregivers receive real nurture from unfamiliar religious faiths, different than their own?

In my family's case, we were honored, pleased, and gladdened to hear of care-giving actions taken on our behalf by friends of various faiths. One school-mom contact included my loved one in a hand-written prayer that she left at the Wailing Wall in Jerusalem. Another lit a candle at Notre Dame in Paris.

Buddhism teaches, among other tenets, that (bad news) suffering is inherent to the human condition, but that (good news) meditation and other tools offer a path away from unnecessary confusion and pain. Perhaps that belief can be a reminder to your patient and you that mentality is, or can be, somewhat separate from physicality, in the cancer path. Maybe meditation (secular or religious) can mediate the immediate queasiness some patients feel when they're wheeled in for external beam radiation. And secular tools like guided imagery, placing happy photographs where your patient lives, and aromatherapy, may ease the mind of your loved one.


above: Pain and gain, blended? A dose of radioactive samarium-153 (a radiopharmaceutical) is injected into the catheter and hence body of my loved one, then flushed with attached several saline syringes, to assure all that radiation gets delivered, and not diluted while hiding in the initial syringe

Here's hoping that your patient-buddy and you avoid the decay, half-life, and eerieness of radiation fears in your health journey, that they and you glow with radiant joy, and that y'all are all blessed by an en-lightened load in your travels.

Moving through cancer with better moods, through music

Does the idea of “the dentist’s chair” mean discomfort to you? Does that drill signal mental dissonance?

But, do you, or others who you know, deliver happy distraction then, via deploying there earbuds (for the younger set) or headphones (for older and audiophiles)? Have you heard about folks who ignore dental work by using that chair-time to hear music, an informational podcast, or the radio, rather than that fast-spinning, scary spindrillthingy?

Your cancer patient experiences the equivalent of frequent dental surgery. Rather than fillings, root canals, or crowns, he or she must endure imaging (and “scanxiety,” awaiting the diagnostic results), often chemotherapy, often radiation, and sometimes surgery or other therapies. Can this dental-distraction strategy be redeployed to their delight?

Yes, surely. Well-managed radiological offices offer boomboxes, a library of music CDs, and BYO-music CD policies to help patients while away the time while they are imaged in the quiet machines. (Too bad about the fast-clanging machines that preclude music.)

And you can “bring the music” too.


Why not add some spring to the step of your cancer patient, via music, rather than by cool springy shoes, as sported by this floor nurse

Modern music technology make it easy to give “the gift of cool tunes.” New Internet business models adopted by a portion of the music industry now facilitate your facilitating your loved one’s well-being.


The message in the tune “/Stick To It/” (or, perhaps "/Move On/") as recorded by long-time New Orleans based, native-Swede star recording artist Theresa Andersson gets this writer through hard times: “/Make A Plan And/Stick To It/Come On,/You Know/You Can do it;/Every Time Your/Body Gets Weak/Take A Deep Breath/And Move On/”

How best to get about this?

First, “ask a teenager!” This decades-old advice by management guru Tom Peters still holds. Teens are tech-clueful and usually happy to help hapless oldsters. Maybe you’ll even get lucky and get a “hand-me-up.” That’s a piece of consumer electronics that’s obsoleted by new products. It’s still functional, but about to be discarded, per no longer meeting the features, fashion, or other parameters of the demanding teen digital technology consumer.

Second, “play deejay!” Choose a mood. Determine which type of energy or emotion that you want to deliver to your patient-buddy. Is it energization? Light-heartedness? Heavy-hitting strength?

Third, consider trying to include humor, riddles, puns, and other fun via smartly-selected songs’ lyrics. Your music-fan friends and contacts can help you select the best set-list; so challenge their creativity in a group email, appealing for the addition of supplemental songs. For example, for older folk, especially those with radiation therapy or skeletal challenges, mightn’t they remember “/The Hipbone’s Connected To The Kneebone/”? For recipients with a sassy spirit or the r’n’b, blues, or soul music fan, what about “/It Ain’t The Meat, It’s The Motion/”?

Fourth, “work the Web.” You can remember old and identify new songs by key words in song titles using www.allmusic.com and presumably other Web sites.

Fifth, buy or borrow a podplayer, to record, store, and deliver music in MP3 file format. They’re available at under USD $100 at all consumer electronics outlets. Also, many modern cellphones and PDAs (personal digital assistants) offer such features.

Finally, link up with legitimate music-source resources. Everybody knows Apple’s iTunes business “home run.” And there are other Web site and physical kiosk copyright-compliant custom-CD and single-song outlets. Always affirmatively assure that your music compiling and copying is authorized by the music owners. Don’t fall for the nouveau teen belief or “gimme culture” credo that “if it’s on the Web, it must, or at least should be free” or “I’m too busy to worry about ethical niceties.”

So go and spin some songs in the heart of your cancer-patient loved one. And it’s OK to sing or dance while you do it, too.


Get your patient-buddy ready for cancer treatment with good-spirited music. We’ll spin the goldy-oldy 1969 hit "/Get Ready/" before my loved one gets all bones zapped with a mega-dose of samarium-153, a rare earth radioactive element only discovered in recent decades in a few spots on the planet, in a new clinical trial.

(Photo of Theresa Andersson by Miranda Penn Turin.)

Can segmentation help cancer caregivers make better sense of their new work?

Can parsing the components of this new effort make your new work lighter, or at least clearer?

Here’s an observation, than an action recommendation.

Observation: Our emotional reactions - to cancer or other surprises or challenges - may be unitary, at least initially. New fear can cancel appreciation (e.g., of blessings, resources, or future opportunities). Anger (e.g., at new disease) often overwrites thoughtful consideration (e.g., of options). And angst typically blots out joy.

But cancer is a diverse experience. Hence the common wisdom that “it’s a roller coaster” of ups and downs for the patient. Similarly, molecular research reveals that individual tumors in breast cancer can be heterogeneous, containing portions that are both estrogen-expressing (“ER+”) structures and not, and both progesterone-expressing (“PR+”) and not, in the same cluster of cancer cells.

So perhaps you can ease your long haul of cancer caregiving by dividing, before you conquer.

Parsing is what our medical teams do, gathering and sifting data in their diagnostic and prognostic labors.

Likewise, there are separate desired and undesired piece-parts of cancer caregiving. Surgeons sever lost, versus save-able, flesh. Stem cell transplant teams first harvest out patient blood, before “apheresis” gear separates the components of blood and then culls those uber-cells, for freezing and later infusion into the patient, as shown below.



above: steady hands of veteran nurse setting up 2-pipes apheresis machine, to withdraw blood from the resting patient, using one of the fat lumens of a 2-headed central venous catheter, and then return the remainder of the blood via the second pipe after separating and saving the stem cell portion


above: the heart of a blood “apheresis” machine is the centrifuge, hidden inside the equipment’s cabinet; similarly, the process of cancer diagnosis and treatment includes segmenting before study and action

So, in our support for our cancer-patient loved ones, perhaps we’ll be more effective if we tease out our resilient strengths from our tangled confusion, our useful resources apart from our worries. And we can (and should) identify and deploy what we can do that the physicians, nurses, and other medical folks can’t.

Action Recommendation: We’re all given different gifts. Identity and deploy your special skills (your “secret sauce”).

Some folks are skilled listeners. People who are house-cleaners, carpool-drivers, paper-filers, playdate chaperones, or number-crunchers, and everyone else can all lend a hand. In recent years, “Internet-beaver” researchers have found distant but relevant resources for their loved ones. I found via Web research the physician-researcher in whose Phase II clinical trial my loved one is now patient #7.

Let’s all optimize our efforts and marshal our strengths, remembering: cancer: it’s surely a nasty thing, but it’s not a single thing.

"Cancierge": for Cancer Caregivers (concierges)

... striving to gather tools and views that cancer caregivers can use....

Welcome to the unwelcome world of aiding your cancer-patient loved one. Sorry to see you, too, here.

Today, as a caregiver, you still have same footing. You've got one firm foot in the same, "real" world - seen, known, safe, round.

But now we caregivers also have a new, wobbling spot on the planet. You've got a new, second leg mired deep in a new, unfamiliar field. In cancer caregiving, uncertain biology tangles with mixed emotions and strange processes.

Cancer wings patient and loved ones away to a new place, with new words, worries, implements, healers, and ambiguities. It's easy to get tripped up.

are you "Home Alone," a forgotten child, in over your head, as a cancer caregiver?

You'll face hidden processes. Concerns of loved ones just under the surface of pleasant communications. Clear-and-present dangers. "Known unknowns." And new tools. But hopefully you'll also experience "progress" in health and hope, not that "progress" meaning more disease.

You can help both your patient-loved-one and yourself with just-out-of-view tools and information-nuggets. With a little digging, you can mine some "cancer journey" gold. It may be a little painful and mighty ugly, but useful (just like the catheter shown below - the 3d one installed in my bride's shoulder in the 7 months since her initial cancer diagnosis).

Here, I hope to share cancer-caregiving planning, advocacy, research, and other tools. The future posts will include a variety of concepts, Web sites links, MP3s recommendations, questions, and other armanents that I've forged and found, in case you care to deploy such in your and your loved one's path.

right: thinner-pipes dual-lumens central venous catheter, for upcoming administration (infusion) of cancer-attacking radionucleotide*

* .... which yesterday replaced the fatter-piped stem cells harvesting one ... that two weeks ago replaced the original, unseen subcutaneous "porta-cath" intended for chemotherapy ... which was expected during her first month's diagnosis, but never came, mooted in a mere four weeks after its original May installation, per her soon downgrading to "stage iv" (metastatic cancer, that has escaped the breast/shoulder region)