Cancierge - For Cancer Caregivers (concierges)

Be prepared – for what the Boy Scouts -don’t- teach you.

2009-02-28T13:18:00.000-08:00

In your cancer-caregiver travel, you’ll meet and like a patient who dies. Maybe more than one. My Boy Scout training didn’t prepare me for this.

What might you do, when “The Big ‘C’ “ cancels an actual character in your life?

How can we “cancierges” adapt to that absence?

When do we make sense of that smiling soul who we used to see?

How should we feel, when he or she is no longer there, in that same clinic, waiting room, or “chemo lounge”?**

I just lost my first cancer-patient friend. We only talked once. It was just last month in a hospital unit choked with mostly aged folks. But that former cancer patient and I been had spiritually connected many times before, over ten years, when I’d seen his bands perform, heard his playing on two other friends’ albums, and been blessed by his world-class gifts (on the Telecaster, that twang-slinging guitar preferred by many country music artists). Which is how I knew his face, sitting in the orthopedics unit, displaced from the fond, familiar comfort of a great restaurant/nightclub in our town into another city’s cancer hospital. There, in the orthopedics waiting room, I introduced myself, complimented and thanked him for his music gifts to me and others. Then, he gave me hospital navigation tips.

Cancer changes so much, too much, too soon. In the medical context, we were new fellow, involuntary colleagues. Back in our prior, music context, we had been “fellow church members,” forever nurtured and linked by acknowledging the joy, healing, and wonder that we both received from the sacrament of human collective music-making.

But this week, a dear friend’s email said that, this day, she was “remembering” him.

So, what do you do with cancer death of those you know?

Well, wondering why it worked out this way, is one way for concierge coping.

Internet research can enable and accelerate that internal action. Working the Web to discover “cause of death” is a reasonable task. (Maybe it will become a sixth stage in the Kübler-Ross model of grieving?) You can travel “virtually,” via computer and telephony, to try to tell yourself “what happened?” and why “ this soul I know?” (You could say, instead, “this soul I knew.” But why not allow yourself the present tense, not the past? Why not recognize the relief and reality of a dead friend’s ongoing memory and its nurture?) I did. And I found the obituary in a flash. But few text-clues were conceded there on “cause of death.”

So, then, you can inquire of others who knew the late patient. I did.

I emailed mutual friends: “Was it lung cancer? Was he a smoker?” (So many musicians and artists have been dependent on tobacco or other harmful substances, at least in prior years.) Our mutual friend replied the next day “He was a heavy smoker all his life.” So maybe gathering facts that differentiate the deceased from your loved one, can help you buffer your budding anticipatory grief. Determining disparate diagnoses and diseases might help heal and delay your worries about your loved one’s longevity.

What else might you do, after such a death?

Well, the Internet changes death and coping with dying too (not just research, education, commerce, travel, parenting, and everything else). You needn’t actually, physically travel to a wake or funeral service. I attended his passing from my residence. I honored his life, and in effect threw one more flower on his grave, by posting on a Web site obituary my memories of him and his spiritual gifts to me. (Many Web sites enable and encourage such supplemental readers commentaries.) It’s too late for me to carry my CD of his band’s music into the hospital and hope to find him and get his autograph on the liner notes in the jewel case, as I’d planned. Instead, I told his other admirers the story of his kindness to me and my cancer-kin when we were newbies, navigating that same hospital.

And some cancer caregivers may want to ponder the sacraments and views that various faiths proclaim about a person’s passing. Our Buddhist friends see death as an opportunity, to move up and away from life’s petty attachments and inevitable suffering. Listen to “/I’ll Fly Away/” and many other gospel and formal church songs for a joyous view of Christianity about passing. And now’s an opportunity to research the wisdom of many other religions. Ever wondered what went on, in “sitting shiva,” among Jewish friends? How does reading the Rosary relate to mortality for Catholics? What are the mourning practices of Muslim, Hindus, and other faiths?

Want to honor the fallen? Got cash? Consider donating to a non-profit supporting cancer research or education. Got health? Given blood lately?

Here’s the hard one. Do you disclose it to your patient? Does cancer-caregiving include delivering death-news? Is it wise or ethical to tell your loved one “Remember that guitarist guy and our chatting in that waiting room? He’s dead now.” Maybe so, if the deceased was your friend, and it helps for our patient to know your feelings now. Maybe so, if it helps you and yours to appreciate each day, or to acknowledge that another cancer sufferer has now gone away from an aching body’s pains. Maybe so, on the idea that “that doth kill another cancer sufferer, might make your cancer-burdened loved one stronger.” But maybe not, if that information would be another, internal burden for your loved one.

Be prepared, the Boy Scouts tell us.

**For you newbies, “chemo lounge” is too-damn-many recliner chairs all arranged in rows in a chemotherapy facility. It’s where many cancer patients go to have carefully-chosen, nuanced poisons slow-dripped into their veins, seeking later better health. Look for roll-up medication-infusion metal trees, hopefully eased with nearby televisions, recent magazines, power outlets (for personal music players and laptop productivity), and attentive, experienced cancer-specialist nurses. Those nurses often wear “hazmat” [hazardous materials] protective clothing to ward off a possible spill of ultra- acidic chemotherapy medication.

Caregiver medicine via movement: have you done dancing therapy?

2009-02-15T13:37:00.001-08:00

Remember those rockin’ original television ads when the Apple iPod product was released? Still smiling at those pastel silhouettes of dancers moving fluidly to the grooving music?

And have you pondered that poster? The one that urges everyone to “sing like no one’s listening, love like no one’s ever had a broken heart, and dance like nobody’s watching”?

Does it seem you’re stuck in the cancer-care journey? Have you ever secretly savored a fantasy of busting a move out of hospital-halls hell and escaping dreary doctors, to some carefree destination?

Ever feel isolated or sad in your individual cancer-caregiving? Maybe immersion in collective joy could help you beat those blues?

So, when’s the last time you’ve danced yourself into a happy, healthy, sweaty lather?

When’s the last time you’ve tried new steps? Can fancy footwork work to get you to a healthier mind-set? Won’t wiggling on the floor nurse your spirit? Can twisting and turning to the tune of music not just elevate your pulse, but also help you turn from fear to elation?

above: Dance Therapy Unit, just 15 minutes from our hospital

This weekend a crowd of new friends, all linked by their cancer work (jobs) or destiny (treatments) met up at a jumpin’ local food-music-and-dance joint. Gumbo and beer was optional. But joy was inevitable. Everybody smiled, sweated, got their grins on, and ended their evening with “when can we do this again?”

But, what if you’ve never done or even seen some new style of dancing before? Dare you dance bravely on some wooden floor where you’ve never gone before? What would you do? What will you do?

above: zydeco recording artist Marcus Ardoin does a sound check to assess the artistic health of the relative volume levels of his band’s many amplifiers, standing in the crowd on the dance floor

No problem. There’s a first time for everything - including joyous things like new dances, not just horrid things like cancer.

And it’s way easier now to learn and try new dances, than in prior years. New tools can help you find your way.

1. www.Youtube.com. Dance-lovers have posted many free video-with-audio demonstrations. You too can nab some how-to lessons on the free, public Web portion of the global Internet. Missed that move? Then you can stop and do an instant replay of that happy footwork. Such Web-delivered education is how a new global Guinness Book of Records level was set last summer for simultaneous, planetary, multi-sites performance of Michael Jackson’s “Thriller” dance, with over 800 dancers in my town (teaching videos and other details are available at www.thrilltheworld.com).

2. Instructional DVDs and Videos. Serious dancers love instructing and including novices. Some have gone semi-professional, producing (literally) step-by-step, break-it-down, show-you-how coaching tools. You can watch ‘em in the privacy of your residence, hotel, or hospital room, and on some computers if it’s a DVD rather than a VCR. (That’s how I finally mastered zydeco, despite dancing many other styles for decades.)

3. New Public Library Functionality. Many big-city libraries have added a -collection-capture-concierge- feature to their Web sites. You can not only look up in their catalogue the content, titles, and availability of dance videos (or whatever other items might be your interest). You can also instruct ‘em to transport your selected items to your nearest branch, for easier pick-up (and less cost in time, gas, and environmental impact). Let your fingers do the walkin’ (on your computer keyboard), so your legs can get to dancing sooner out on the floor. Put your tax dollars to work, to working out your cancer-concierge doldrums.

4. Alternative Therapy. Check out whether a progressive vendor of cancer care in your area offers not only the more mainstream “alternative” or “integrative” aids to spirit and body - like yoga, massage, acupuncture, music therapy, meditation, aromatherapy, etc. - but maybe also group dance sessions.

5. Ask Somebodies To Go Dance! Many cancer patients are advised that they need to learn to ask for help, especially during times of significant fatigue from chemotherapy or other treatment. Don’t wait for well-meaning contacts to telepathically divine what you need or prefer, for your support. Caregivers too may need to bite the bullet of pride or shyness, and tell their well-wishers what they want and need for their psychic support. My recent caregiving-coping request to friends was “Can we meet up at this dance scene that I’ve heard about and had recommended? I need to shake off the daily hospital heebie-jeebies!”

6. Ask Somebody To Dance! You don’t always have to “dance with the one that brought you” to the dance. Fortune favors the bold. An 87-year-old lady asked little old 50-something me to dance at a recent zydeco event. She showed the widest smile there and stole the show with her own groovin’ moves.

above: Who’s not having a good time?

There’s a reason that Lee Ann Womack’s 2001 song “/I Hope You Dance/” was a mega-hit: her message hits home in the human heart.

So, get away from nurses checking your patient’s heartbeat and other vital signs. It’s time to revive your vitality with the beat of the music. Get out on the dance floor and get your backfield in motion!

Complete this series: doctor's stethoscope, soldier's rifle, and your ... what?

2009-02-08T07:19:00.000-08:00

What’s your tool?

What do you take to your cancer caregiver job? What’s the helper device, without which you’d feel like a fool? Before you go from where you live, what must you remember to grab first?

Pen and pad? Nope. Tissues for tears? No. Handy-dandy, side-splitting, pocket-size anthology of jokes about physicians? Not necessarily.

How about: a digital camera. (When added to an email account, you can send your shots world-wide.)

Why? Can photography cure? How do you imagine imaging can fit in to fighting back against cancer?

1. Images are inclusive. Your patient’s well-wishers will include plenty of people who find email painful, or prefer to avoid long phone calls.

2. Showing’s better than telling. If a picture tells a thousand words, one shutter-snap saves gushers of spilled ink.

3. Memories are made of many flavors, for many people. What’s in the past? There’s ideas, sounds, flavors, smells, and tactile sensations, but certainly also images. Living large and strong includes “seeing” fine prior times. Color (or even black & white) excerpts of earlier events deliver more living, echoed later.

4. “They say the memory’s the 2d thing to go as we age; I forget what the first was.” Everybody forgets, with or without “chemobrain.” Snapshots save delicious data, scenes seen only in long-gone segments of life, and appreciation of days gone by.

5. Save stand-up comedy for professionals. Not everybody can tell a joke well. But sometimes a quick hand with a camera can capture “humor therapy” or “medicine via photography.”

above: The Physical Therapy Department staff at our hospital deliver “humor therapy” via arranged equipment, not just therapeutic exercise advice. (Plus, they gave me back-up for my practice, when taking photos of medical professionals, of yelling, just before the shot, not “Say Cheese!” but “Say Boogerectomy!”)

6. “Beam me up, Scotty!” Star Trek transporter technology isn’t quite yet available. But you can transport your patient’s peers, friends, co-workers, and family members there, where the cancer action is, into the medical war theatre, via photography. You can deliver an emotional link between your loved one and their wide-scattered support community, by making photographs, and then making sure they’re delivered to the team of those-who-care. You can be their eyes, on the “before, “what happened,” “how it was done,” and “after.”

above: Before: Prior cryogenic (negative 130 degrees Celsius) preservation of my bride’s stem cells is ending, as specialist nurse gently, briefly thaws one of six bags that will “return” a working supply of blood marrow and hence an immune system to my cancer patient, after receiving mega-radiation – not an everyday sight.

above: After: Stem cell transplant completed – my bride drained 6 bags full of her adult hematopoietic progenitor cells, collected last year via apheresis.

Cameras come cheap now, thanks to many microelectronics innovations. Rechargeable batteries protect our battered planet. There are no local-pharmacy processing charges, when you shoot digital.

That’s how I see it. What do you see?

Have you been a good scout? Got the best path picked?

2009-02-03T08:13:00.001-08:00

Got your machete? A mysterious, tattered, unique map, as in the adventure movies? Compass? Satellite-linked, solar-powered, light-weight, GPS-equipped, hand-held modern multi-function navigation emergency electronic device? Big boots? Good, then you’re ready for your new role.

Pathfinder.

above: Want to pioneer an uncharted territory? Can you bushwhack coast to coast?

What, you weren’t an Eagle Scout? You didn’t get an outdoors way-finding award in Girl Scouts? You weren’t ever “on point” in your military patrol? No problem. New molecular knowledge, new genetic assays and diagnostic gear, and new treatments mean that prior years’ training and older maps wouldn’t be best anyway, for cancer caregiving.

Why? Because both cancer patient-ship and cancer caregiving are partly about finding new paths. And you can help.

At a “focus group” meeting last week, I heard another caregiver tell the tale of his and his loved one’s struggles to see clearly where they were supposed to be and go. Both patient and spouse were frustrated by the physical tangle of multiple medical buildings. (We get our cancer care at a research-heavy, globally known hospital, so having a veteran, Ph.D.-bearing nursing researcher ask for and consider caregivers’ inputs is a benefit. Our meeting was mustered up towards helping the staff’s writing a new manual for caregivers of stem cell transplant patients.)

That fellow-traveler spouse-caregiver admitted geographic and sensory confusion - despite prior-years professional training in architecture and now working in landscape design. So if even spatially-oriented people like him are challenged by corridors, corners, and connections in care centers, then imagine the brain-tangle for our cancer patients!

above: Who’s overlooking your cancer patient’s care path?

above: Who? Who?

What can we caregivers do, to help define and find that best-functioning cancer-journey physical path?

1. Thinking Ahead. Maybe worry, fatigue, nausea, “chemobrain,” depression, frustration, and/or pain inhibit your patient’s geo-thinking. Caregivers can conceive the right route. Checklists are cool. Do you believe that bloodwork (i.e., another lab draw and blood processing) is needed on arrival? Feel like pharmacy-fetching is foretold, before leaving? Two heads are better than one!

2. Measuring Motion. Is your patient weary, feeble, tangled with mobile intravenous infusion bags, or otherwise not nice with traversing distances? You better become the detective of the close-in, overhead-covered drop-off points. You’re the decider of disabled-folks parking.

3. Maybe Meet-Ups? Parking can be pleasant, outside autos. Could your cancer patient be pleased by letting you go for pharmacy pick-up, cafeteria take-out, and other schlepping? Find the lobby, lounge, quiet room, cybercenter, or other spot that your loved one likes, and make that your later regrouping site, while you go get needed goodies.

4. Learn From the Locals. Comraderie is good karma. Prior patients have been there and done that. Ask their caregivers for tricks of the trade, turns that will fool you, and short-cuts that may be safe but not well-marked on official maps.

5. Work the Web. For street transport, Internet-based route-finding free systems are a deity-send for path planning. Yes, www.Mapquest.com got “first mover” market visibility and traffic. But Google.com, Yahoo.com, and other sites also allow you to way-find. Before you drive, type in your destination, your origination, and even optional preferences, and receive back both narrative (texts regarding turns and distances) and visual (map) route instructions.

above: Do you know the fastest route to the nearest appropriate Emergency Room for your cancer patient? (For that matter, for all loved ones, including those who’re currently healthy?)

P.S.: Note to medical and architectural researchers: Please consider and experiment with deploying mock-3D “virtual reality” technology to help hospital visitors. The tools and technology are there; why not harvest some “first mover” p.r. for patient-customer care with free lobby kiosks?!

Go forth toward good cancer care – but be well-directed!

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

2009-01-25T14:11:00.000-08:00

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?

2009-01-22T05:35:00.001-08:00

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.”

2009-01-17T05:19:00.000-08:00

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

2009-01-11T18:17:00.000-08:00

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?

2009-01-08T05:49:00.000-08:00

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

2009-01-06T10:59:00.000-08:00

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?

2009-01-05T18:53:00.000-08:00

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)

2009-01-03T14:21:00.000-08:00

... 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)