Saturday, February 28, 2009

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

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.

Sunday, February 15, 2009

Caregiver medicine via movement: have you done dancing therapy?

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!

Sunday, February 8, 2009

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

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?

Tuesday, February 3, 2009

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

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!