Sabtu, 31 Januari 2015

Cancer - is there an app for that?

When I went through chemo my oncologist gave me printed form where I could readily record my temperature, pain, nausea (on a scale of one through ten though in my case the range began at 10 and went from there) and other things I quickly forgot about. But I can still see the form. As the treatments with FAC progressed my desire to be "the perfect (read: anal) patient" decreased. My intake form started to look like an abandoned crossword puzzle. The notes in my journal went from precise descriptions, to short poems, to gibberish. I was proud enough just to make it to my appointments and smile at the receptionist.
     Was I nauseated: yes. Couldn't even stand to see the word.
     What was my temperature? My what?  Does this mean I have to get up?  For real?
     The pain ranking was elementary, my dear Watson. You expressed your pain in a series of smiley faces that ranged from the ubiquitous and perfectly happy yellow smiley face to the bilious, slimy green one with yes, TEARS. If I'd ever felt that badly I certainly wouldn't have been writing on my patient intake form. I'd have been in an ambulance.
      Time passes. Things change.
      When our medical system evolves to the place where it it totally patient-centered the necessary symptom management should easily be accomplished via an app that is tied in to your cancer treatment center. Yes, well.
      Theoretically apps should make things easier. For you. That's the point of all this and I don't know that for sure or what your experience is with them. Our question tonight on #BCSM is this: how are you using apps to help manage your cancer treatment? Which ones are you using?  How are they facilitating your conversations with your doctor? Are you using any now that treatment is over?
       When we finalized this topic both Alicia Staley (@stales) and Robert S. Miller, MD (@rsm2800) suggested the apps available at cancer.net, that includes guides for 120 kinds of cancer, symptom trackers, and videos, podcasts, etc. Alicia will talk about her experience using that application tonight.
       My friend Jennfer Texada (@JennTex) at MD Anderson also sent me this lisT: http://www.mdanderson.org/publications/focused-on-health/issues/2015-july/mobileappscancer.html. The list includes a number of prevention apps from Livestrong and the American Cancer Society as well as the ASCO programs mentioned above. Keep in mind this isn't a conversation about the quantified self movement, we can chat about that another time if you like, but cancer specific apps that are helping you manage your disease. Another good one is NCCN guidlelines, a breast cancer diagnosis guide available from breastcancer.org, and an encyclopedia of treatment terms via Livestrong. These are available on iTunes.
       We'll look forward to talking with you tonight at 9 pm ET/6 Pacific.
       For now, let us know what we need to add to the list!
      --jms 

Kamis, 29 Januari 2015

Cancer Garden

Update: So many of you have kindly asked about Steve's biopsy.  Unfortunately those cells were consistent with malignant melanoma.  We were disappointed and shocked, but in a strange way, as each life experience evolves from past -- we're more familiar now with helpful ways to handle this.  We truly are survivors, in every sense of the word.  That doesn't mean it's easy.  Cancer is never easy.


We spent yesterday at MD Anderson meeting with surgical oncologist Merrick Ross, MD and plastic surgeon Steven Kronowitz, MD.  The lower portion of his ear will be removed, then reconstructed.  As soon as the Dr. Kronowitz said "flap" and "stages," then used the word "patience" at least ten times I knew we were in for more than I'd expected.  Since Steve had received prior radiation -- which damages the elasticity of the skin -- reconstruction will have more than the usual risks.  After the Dr. Ross makes the wide excision and obtains clear margins, Dr. Kronowitz will follow and secure a flap with skin from behind his ear.  This skin is sewed on to what remains of his lower ear.  In essence the flap will pin his ear to his neck.  This will remain in place until a new blood supply is established.  Then the flap will be separated, some cartilage may be taken from his other ear, and he'll be good to go.


For a man who cycles six days out of seven the period of infusing the flap -- which could take up to three months -- might be a kind of purgatory. We didn't even ask about a planned trip to west Texas for cycling in March.  He'll ask when he's ready for the answer.  Yesterday wasn't that day.


We're grateful that -- as before - this cancer is localized.  We're grateful we're within an hour's drive of the country's number one cancer facility.  We're grateful for an hour spent in the sunshine in between appointments, sharing a cup of coffee and passing the time of day.

*****
Thomas Avena 

Cancer Garden
*****
for the inauguration of the Mt. Zion Cancer Center Garden, 1995

The cancer garden, protected by buildings, one unfinished. Still
the wind will continue through the garden when these walls
are sewn in.  Everything known in the cancer garden devolves 
to breath. If we can, we open gray chambers and fingers
of the lung. Such breath can sting.  Here are vermilion 
snapdragons, mild blue agapanthus, poppy. Here in our 
veins is the blood of the Madagascar periwinkle; its sulfates --
vincristine, vinblastine, effective against neoplasm.

In the garden we find the man whose veins collapsed nine
times, and each time the neon-colored serum stopped.
The technicians tried their tricks to open a vein, a
and the strange, ambivalent poison stained (oh 
how to make these poisons more selective - more
devious and therefore purposeful).  In the cancer
garden we are grateful for the slenderness of needles,
the wisdom of the phlebotomist's hand.  For the plain 
explanation of a doctor -- what is known, and what is

unknown. In the garden there is breath, ambivalence 
(in the sense of unknowing - you can live with the fall 
of water on your brow, drop by drop). Can you live
with the chill, with bright daubs of petal-bruised flesh,
catheter under the skin. You can look at your body
naked in a mirror, with your hands you can defend
its territories.  Is the cancer sinister or blameless? Or 

just cells, like all life, with a blind and blinding purpose.
An instinct to survive.  In the garden, imagine cancer
as weak and depressed.  If the cancer is acid, then the soil 
of your body is alkaline; if alkaline, then acid. Let us
pray your body inhospitable to it.  Your assertion greater
than that of the cancer -- your desire to live so much the 
greater.  A riot of marigolds shooting up the spine - a firework

of neutrophil.  In the cancer garden all the creatures are active.
Every day, a thousand kindnesses, or a thousand suspicions,
hyper-real, like the furniture of the infusion clinic.  In 
the cancer garden all of nature is laughing.

from The Occident
Reprinted from:
The Best American Poetry, 1996.  Series Editor: David Lehman.

Note about the poet:
Thomas Avena, born in Chicago in l959, wrote this poem at the invitation of Ann Chamberlain, artist-in-residence at the UCSF Mt. Zion Cancer Center.  "I wrote about the garden as a physical space, but also as a projection of the body and of the internal war -- and the extreme and bewildering (emphasis mine) processes -- that the cancer patient is forced to undergo.  I wanted these lines to flush and fill like the movement of blood within the body.  Ann has said that "Cancer Garden" distills the experience of people who pass through the garden. I don't know if this is true, but it contains part of my experience, of Ann's experience, and that of my life's partner..."  Avena, his partner and Ann Chamberlain are all cancer survivors.

Selasa, 27 Januari 2015

Quick Takes: Debbie Thomas



Today I'm introducing one of the new features for "Women With Cancer" -- Quick Takes -- a question and answer column that I'll run twice a month.   I learn so much and am constantly inspired by hearing other women's stories and know you will be, too.  Let me know what you think! 


When friends ask me where or how I met Debbie Thomas, 44, of Hampton Falls, New Hampshire, I have to stop and think.  It seems like she’s been a part of my life for a long time -- that's the kind of bond we share -- but the truth is I met her last summer.  My introduction came through the thoughts expressed from her blog, simply titled “Debbie’s Cancer Blog” (http://debbiescancerblog.blogspot.com/) and her incredible story.  From there, our correspondence continued on Twitter, to email and talking on the phone as we can.  She was diagnosed in 2006, and I’ll ask her to tell you the rest.




Since we met through words let’s start there.  What do you think of blogging?   I like blogging.  For me it’s an extension of journaling, which I do a fair amount of. Blogging was a way for me to tell my story.  It’s great that we can all share our stories with like minded souls.

Last fall, when your treatment ended, you wrote that your body was “getting ready for a break, but my mind was just getting started.” Can you tell us some more about what you were going through?  When treatment ended it was great for my body.   If I’d been asked to do any more physically my body might have broken down.  During treatment, my mind was in a state of 'rest'.  I could only focus on one day at a time. As soon as treatment ended I started chewing mentally on the reality of cancer and everything I went through.   I started to accept that this was really happening to me and that it was scary as hell.   For the most part my mind went straight to the negatives.  Without the constant treadmill of treatment there was time on my hands, and time to consider what might happen next.  And it was very hard for me to not travel down the 'recurrence' path.   Then when it DID happen I was right back in shock and despair again. I have to say that going through it twice may have led me finally to a different place completely.

Please tell us what happened.  How soon after did you find out your cancer recurred and how?  Recovering from treatment after my cancer had metastasized brought me to a different place. I still had the struggles similar to the first recovery – the exhaustion, depression, anxiety, and side effects of medication.  But after my first treatment I was terrified that the cancer would come back. So when it did my worst nightmare had happened.  But when you then live through your worst nightmare and manage to come out stronger you feel like you have come to a new place.  You’re not as scared anymore.  
           My recurrence happened about nine months after I finished treatment the first time.  This treatment included a left breast mastectomy, four months of chemo, seven weeks of radiation and a year of Herceptin.  I was having some pain in my left shoulder blade, which is the side I had my breast cancer on. The pain was a deep sort of pain and unusual for me. It came and went. I was running and lifting weights and doing yoga so I thought (was hoping) I had hurt myself.  But when I met with my surgeon in January, two years post mastectomy, she suggested a bone scan. The bone scan showed something tiny in one vertebra so she suggested a PET Scan. This scan along with a blood test confirmed one small cancerous spot on the left side of my first thoracic vertebra.
Another striking statement to me was your observation that “there is a fine line between kicking cancer’s butt and allowing yourself to recover.”  I’d love to hear more about that.   When I wrote this I was considering the line between getting back to life after treatment while allowing for the time and space needed to recover from the ordeal you’ve just experienced.  I was mostly talking about the physical aspects but I think it applies to mental and psychological or emotional aspects as well.  I wanted to return to my 'normal' routine or working, raising my daughter, taking care of the house, the dog,  volunteering …friend ...I wanted to do it all again just like I had before cancer but found that I couldn't.  I would often get frustrated about that.  But you also don't want to close yourself off and baby yourself too much.  This leads to isolation, deeper depression and physical atrophy. 
           So how do you walk the line between taking your life back and perhaps even pushing yourself to new lengths (like running a half-marathon) versus those times when you really need to go to bed early and  take the every elusive "time-for-yourself"? It is a challenge every day to find the balance.

You and Nick work together, live together and are raising a wonderful daughter.  What’s your secret?  Wow, that's a good question! We have our ups and downs just like any couple. But we do work well together.   We complement each other. I am pretty laid back and Nick is pretty driven, but luckily we don't drive each other crazy with these opposite ways….most of the time (laughing). We take turns a lot and we talk about EVERYTHING. If you're not defensive and can really listen to each other you can usually find a way to work through issues that arise.  Going through cancer made us closer, made us appreciate each other more and see sides of each other we hadn't focused on before. It has also made us grow as individuals and learn new things about ourselves, which in turn has made us a stronger couple.

You work with images all day long.  Have you done any projects that resonate with you about breast cancer?  Did you photograph your story?  All of our work is commercial/corporate photography, so I never have really worked on anything related to breast cancer. The interesting thing was to work during treatment. I went to a few portfolio showings bald but wearing a hat.  In retrospect it wasn't probably the best business move. Some people asked me what was up, others said nothing and I never knew if I should broach the subject.  I did not photograph my story but I wish I had. I have a few pictures of me bald and if I can manage to scan them I will send a couple. I find them fascinating to look at. In one picture I am standing with my arm around my Mom in our kitchen and we are both smiling. When I showed that picture to my therapist a while back she asked me what I think when I look at that picture and I said I wonder why I am smiling! I think it would have been too painful for Nick to truly photograph me as we struggled through it all, some days were so difficult.
What books and magazines are on your reading table?  I just finished "Living Life as a Thank You: The Transformative Power of Daily Gratitude" by Nina Lesowitz and Mary Beth Sammons.   Everyone should run out immediately and buy this book.  It changed my life. I am now reading "My Life in France" by Julia Child with Alex Prud'homme.  I also have "Become a Better You" by Joel Osteen.  His writing has helped to renew my faith and to remind me to act in faith, love and hope.  I also read "Runner's World" and "Budget Travel".

You’re a daughter.  Wife.  Mother.  Businesswoman.  Runner.  Blogger.  Friend.  And now you’re a metastatic breast cancer survivor.  How weird is that?  So very weird!  Even though it has been three years and two diagnoses I sometimes STILL can't believe it has happened to me.  Sometimes I have a hard time reconciling that!  Every morning after my shower I rub lotion on the flat, scared, tanned left side of my chest where my breast used to be.  It is an obvious, physical reminder of what I have been through.  And of course I “know” I have been through it but sometimes I still haven't accepted it. And maybe in some ways it is good. I focus on all the other aspects of my life -- work, family, running, writing, social networking -- there’s no room for cancer. Or cancer is a small part among the many other parts of my life. 


That’s understandable.  Three years isn’t that long over the course of a life.   You’ve written about therapy.  From my vantage point it has helped you pass through some enormous hurdles fairly quickly.  And the clue is:  pass through, not over.  Is that a fair statement?  I don’t at all want to diminish your courage, which I find inspiring.  I highly recommend therapy to anyone going through a traumatic experience. I wish I had started sooner. I waited until I was pretty deep in depression after my first round of treatment before I finally went. I was lucky to find a great therapist and she has really helped me to go through the tough times. She gives me "homework' which often involves journaling, meditating, saying mantras or affirmations, and exercising. She is a runner too so it is cool to share that interest with her. It has been so helpful to have that objective person who is trained to help, but she is not so objective that she can't shed a little tear when I told her the cancer was back and then again when I told her I ran 6 miles for the first time and was training to run a half-marathon. The plain truth is I would not be where I am emotionally right now if I wasn't going to therapy with this woman.

We all agree:  mastectomy bras are worse than Buster Brown cotton underpants.  Please explain to our friends who have had a mastectomy how you got your “vavoom” back with your Victoria’s Secret Bras?  Oh yeah, the "Granny Bra.” I really just couldn't stand them.  They're too large, too boring and too uncomfortable.  And it’s impossible to wear anything even remotely low-cut because the bra would show. I was used to wearing a low-profile, simple cotton underwire bra from Victoria's Secret.  They were comfy and colorful and had matching undies.  So my sister-in-law, who is also a breast cancer survivor, told me about some sew-in pockets that she bought and then sewed into her regular bras. I bought some and my Mom sewed them into all my favorite Victoria Secret bras. So now I can wear the comfy, colorful bras I have always worn! I can wear a low cut shirt and feel a little sexy, something that is sometimes hard to accomplish when you are missing a breast.

Sometimes, but not always.  Let’s see: what was the last romantic thing Nick has done for you?  A couple days ago he was taking Benny for a walk and he called me to tell me to look out the window. It was an amazing sunset and he wanted to share it with me.  He knew I would want to see it. And to me that is romantic!

Is there anything I haven’t asked you that you’d talk about?  Each person’s cancer journey is unique. But we can find commonalities in our stories.  And ultimately these commonalities can be a source of comfort in a time of despair and fear.  I remember feeling so isolated and lost after my diagnosis and treatment. It seems a long time ago, but I was an outsider in my own skin. I used to think it came from outside me, from other people, but now I think at least half of it came from inside me. But with counseling, the love and support of my family and friends, and some new friends in the cancer community (both survivors and advocates) I have been able to feel more at home in my skin than ever before.  It is all about re-adjustment.
#    #    #

Jumat, 23 Januari 2015

Reading is Believing

When I was diagnosed the first thing I had to have -- after a wise friend placed a blank journal in my hands -- was something to read.   My first purchase was my now well worn copy of Dr. Susan Love's Breast Book/Fourth Edition.  The selection of other memoirs about cancer were slim (or so it seemed to me) and most felt two traumatic First, You Cry by Betty Rollins, or too deep for my gnat-like attention span -- Illness as Metaphor, by Susan Sontag.


After watching the cancer landscape for awhile now I'm convinced that there are two kinds of books that we want.  First we need solidly researched, well written information about cancer.  How technical the information becomes depends on your preference.  You can download excellent information from the American Cancer Society, for example, or plow through articles from medical journals.   What's also critically important is someone whose story we can identify with, even if the writer's cancer, sex or age is different.  



So with this post I'm starting the Women With Cancer Resource Center, with links, from references you send me and those I fhave found and will continue to add to myself.  


From here on out, this will all be new reading for me as well starting with:


1) The Anti-Cancer Diet, A New Way of Life.  David Servan-Schrieber.   If you heard my interview on "Doctor Radio (Sirius 114 & FM19) on Jan. 13 and 20th, I hope you made a note when host Dr. Abe Chachoua mentioned this book.  I made a mental note on my first appearance January 13, then jotted in in bold letters when Dr. Chachoua mentioned it again January 20.  I pay attention to the books respected physicians mention, especially when it concerns cancer.  The author is a survivor and physician himself and reviews speak to a good compilation of prevention strategies.


2)  Crazy, Sexy Cancer. Kris Carr.  I watched the documentary when it was broadcast on network TV and thought it was terrific. http://www.crazysexycancer.com/  What is it like to be young, single and have an unusual cancer? Kris followed her treatment on film the result was outstanding.               There are also two additional books of tips and anecdotes available (with forewards from Sheryl Crowe and Marianne Williamson)  Tweet @bethanymwinsor, a young survivor in Texas who is currently awaiting news on participation in a clinical trial recommended this one to me.


3) Another recommendation came from Tweet @glenbrooknv:  Surviving the Cancer Sytem, a terrific sounding guide book also written by a physician, Mark Fesen, M.D.  This looks like something most of us would have loved to have at the beginning.  I'm going to pick up a copy of Surviving the Cancer System and review it for you.

Still another title was offered by @snwman, You Can Conquer Cancer, by Ian Gawler, described as a practical and inspiring guide.  2007.    
And if your schedule makes reading difficult most the country's large cancer centers have hundreds of titles for download.  For MD Anderson  Cancer Center, downloads approximately 20,000 podcasts per month from http://bit.ly/5K5oXE.


What's on your cancer reading list? What books do you recommend for newly diagnosed? Please share what you know. Have a fabulous weekend!!


Blessings,


Jody
















Rabu, 21 Januari 2015

Dearest Thyroid: I Was Wrong

My Dearest Thyroid,


I was really, really wrong about you.  I'm sorry.


http://iamthefaceofthyroiddisease.org/
Since I first wrote about you last fall, "The fastest growing cancer? Not what you thinkmy awareness about thyroid cancer and its associated disorders has been flipped sideways. Right off the top, I didn't realize that  thyroid cancer is one of the fastest growing cancers in women and that women are three times more likely than men to be diagnosed.  You snagged my attention, right there. 


Before writing that post I was one of "those" people. I thought thyroid cancer was (she confesses, running for cover) easy. I came to this ridiculous conclusion when I was going through chemo. I'd checked into MD Anderson's GreenPark outpatient facility to have my 5FU "boost' following three days of adriamycin and cytoxin. While I waited to be called, oozing nausea from every pore, the woman across from me struck up a conversation. 


As it turned out, she was there to help a friend. She also was happy to tell me that she was a thyroid cancer survivor. She was awesome. "Look, " she said, with a big smile and pointed to the scar on her neck, "it's been ten years."  


Gentle reader, that's when I decided thyroid cancer was easy. Just like that. I was already admiring how beautifully her scar had healed, comparing cancers, stacking up odds, minimizing hers to make myself feel better. At that moment I wanted the easy cancer, the one-day surgery-go-home-and-be-finished-with-all-of-it cancer. I'd even jotted DONE on my calendar for the month of December, unaware that it would take much longer than another year to finish. That's probably the only place where ignorance has ever served me well.


As it turns our dear thyroid, I realize now that no cancers are good.  Period.  Anyone who receives a diagnosis is changed.  There's a reordering in perception, of risk, of vulnerability, and a new acquaintance with fear. There are practical consequences, and many of them are financial. Until health care reform was enacted, cancer could follow you everywhere, like a bad boyfriend.


We know that thyroid cancer (like any) in younger adults is especially hard.  If it's bad enough in your 40's, imagine being 25, or 35 and staring down a potentially frightening illness. The reality of taking replacement hormone therapy, when the thyroid has been removed, probably sounds a lot easier than it is in real life. 


When it gets right down to the truth dear thyroid,  you're amazing. Here are a few things I found today:


1)  Unusual shape: the butterfly-shaped gland is located below the Adam's apple at the base of your neck. 
2)  The thyroid packs a punch:  Hormones produced by the thryoid influence metabolism (i.e, read weight), temperature, and growth and development, including brain development in infancy and childhood. No one can live without thyroid hormones.
3)  Unique qualities: thyroid cells are the only ones in the body that have the ability to absorb iodine, which is required to manufacture T4, the thyroid hormone. The ability of thyroid cells, and most cancer cells, to absorb iodine creates a 'chemotherapy' strategy unlike other cancers. After   the thyroid has been removed and the survivor has recovered from the surgery, a dose of  radioactive iodine is given. Any remaining cancer cells then absorb the "poisonous" iodine and are destroyed.  
4)  Best prevention: routine check-ups. Some thyroid cancer survivors had no symptoms.  By and large the majority have painless nodules. It's estimated that 75% of the population will have nodules at some point and -- according to Endocrine Web - one in 12 - 15 young women have nodules.  The majority are benign.


Since January is dedicated to promoting thyroid cancer awareness and getting one's house in order, I realized my letter was long overdue.  I'm so glad to set this record straight. To read more letters written to "dear thyroid" please visit Dear Thyroid at http://dearthyroid.org. 


With all good wishes,
Jody


Additional sources:
1) For a podcast that addresses the concerns of young women, iodine treatment and fertility: go to  Patient Power, with Andrew Schorr.
2) *James Norman, MD, FACS, FACE, 'Thyroid Cancer' at ENDOCRINE WEB 
3)  About.com:: excellent information
4)  The University of Texas MD Anderson Cancer Center
5) On Twitter: follow @thyroidmary and @dearthyroid

Selasa, 20 Januari 2015

When the Medium Was the Message


Bill Weir of ABC-News
Let's get this straight:  I like Bill Weir. He co-anchors NIGHTLINE and his tongue-in-cheek features often leave me laughing.
         But Tuesday night Bill Weir inadvertently went from writing about to becoming the subject of the latest, hot-off-the-press celebrity doctor book to hit The New York Times bestseller list in 7:06 minutes, the length of the story.
        For the entire week in fact, ABC-News has provided David Agus, MD, a media platform unrivaled by the introduction of any other medical book that I can remember. Is it ratings week? Publicists must be soaking in champagne. While Weir called the Agus book “the most anticipated medical book of the year,” what I heard was a well-respected physician telling an old story in a new way that is a lot more expensive.
         Ask any doctor or advocate: making prevention sexy is the hardest job in town.
         In Weir's case, the calamity prevented was a potentially fatal heart attack. The diagnostic testing he underwent as part of his assignment (at the request of Dr. Agus) revealed a "calcification in the largest artery leading to the heart." That’s a walking time bomb. I'm not knocking the prevention message. Neither are the hundreds and thousands of other internists, family practitioners, and other professionals who find themselves saying the same thing, in different ways, day in and day out. For years. Maybe the ABC story will reach the ears of other 40-year old men who, like Weir, considered yearly check-ups a great idea for anyone but them.
         But I'm not convinced. His story, compelling from an emotional standpoint but low on fact, had an amazing infomercial quality. The prevention aspect really wasn't about prevention at all. It was about the early detection of disease using "cutting-edge" (read expensive) technology. This is not the kind of health reporting we need.  Here's why:

The Celebrity Factor - the "rock star of science" physician.
Both Diane Sawyer and Bill Weir both were quick to point out that Dr. Agus had consulted with Lance Armstrong and Ted Kennedy and as Weir stated, “… kept Steve Jobs alive years beyond what anyone thought was possible."
           Stop right there. Lance, Ted and Steve. Not your everyday individuals. Not your everyday, readily preventable cancers, either. As far as I know there is NO prevention, not to mention early detection, for glioblastoma, the lethal form of brain cancer that claimed Senator Kennedy's life.  Perhaps there’s some combination of blood markers that’s detailed in the book but this small and obviously intentional mention of the three famous patients propagates existing disparities in our medical system.
           One of the secret fears of any person with a life-threatening illness is that somehow, somewhere, there's some treatment that's better than what they can access or afford. To this end too many troll the internet, buying vitamins, supplements, treatments and other 'cures' from quack doctors and companies. Thousands of people who are perfectly healthy do the same thing in the hope of slowing aging or enhancing athletic performance. There are too many people who think that anyone who puts up a professional-looking web page with the MD tagging along after their name is a "rock star doctor." Do you think I’m exaggerating?  Hang around Twitter for a day and watch what people are buying, thinking and doing as part of a ‘healthy’ lifestyle.
           The best doctors are those who partner with you. That’s the new health equation. The NIGHTLINE piece mistakenly leaves the impression that big doctor, big technology leads to big health when in fact, the opposite is just as true. The accretion of everyday choices, how much we move, what we eat, what we do and do not do, even how we think combined yes, with good technology and medical guidance can lead to good health for many.
          Ultimately, the real ‘rock star doctors’ don't have time for television interviews. That doesn't make them any less than those on the best seller lists. They are the ones, who, often late at night, answer emails from patients who aren't even theirs just to set someone straight.

What Didn't Meet the Eye
Anytime you hear the phrase "cutting edge technology" in health care stories take a deep breath. Cutting edge usually means procedures your insurance carrier is bound to deny -- unless Medicare decides to cover it first. Then your carrier will eventually follow suit.
           "The unfortunate truth is that you do have some heart disease now," Dr. Agus tells Bill Weir early on in the piece. That's the pivotal moment. The reporter’s face freezes. All of us with cancer have had the same deer-in-the-headlights moment. It's awful. Your stomach curls. That's also the moment when the reporter’s fact-finding questions vaporize. Once the reporter is the story perspective is gone. Now we’re sharing Bill Weir’s encounter with mortality. We feel badly for him. We feel badly that his father died and truly, we DON'T want his daughter to become an orphan.  In a rapid flash we’ve seen photos of all of them.
         That's television. You become so involved in story that logical questions fade. Just a few of those questions are:
         
  • would a large calcification in a major artery been detected in a routine annual exam?  
  • Was/is there a history of heart disease in Bill Weir’s family? Doesn't ABC-News require - or encourage - its employees and key players to undergo wellness tests?  Better yet, does yours? Or do you have your own wellness plan in place?
  • And finally, what can you do when people feel they are invincible?  Very few are reporters who were asked (and allowed) by their network to undergo tests totaling thousands of dollars as part of a week-long feature called, The End of Illness. Amazingly, this also happens to be the title of David Agus’s book. 
       
The Elephant in the Room
The elephant, which I should have seen coming before she walked right over me, was the DNA testing company founded by Dr. Agus in 2006 that provided some of Weir’s testing. Whether or not the DNA analysis led to the CT scan or not wasn’t clear. Whether the DNA analysis indicated anything else to prevent other than the big blob in Bill’s artery wasn’t clear. The price of the combined tests, not to mention the entire topic of DNA analysis, certainly wasn’t clear. It was ‘good television’ but certainly not good reporting.
         People deserve better. They deserve reporters and producers who read between the lines. I can point out hundreds of cancer survivors who did everything right and were diagnosed with cancer anyway. Their perspectives on “the new this” or “the new that” is occasionally and understandably jaded.  What needs to be evaluated is of what use this information be to them now. We need to focus on preventing the next cancer, which may or may not be something subject to our control.  And there’s the ultimate illusion: that technology can help us control everything.
Maybe.  Maybe not. Can NAVIGENICS’s cutting edge DNA analysis tell me, or anyone else, if there’s an errant genetic blip just waiting kick off cancer again? Would the good measures I already have in place change a genetic reality one iota?
         Stay tuned.  I downloaded The End to Illness faster than you can say jack rabbit.  I’m about to go see for myself.
          In the meantime, I’ll repeat what Dr. Agus told Bill Weir, “Real food, regular schedule, live healthy.”
          And Happy New Year.


###

Cancer Heroes: Our Oncologists




Naoto T. Ueno, M.D. hosts Noriko Miwa, MD, PhD, a colleague visiting from Japan at the Inflammatory Breast Clinic at The University of Texas M.D. Anderson in Houston.   A cancer survivor himself, Dr. Ueno has a special and understanding perspective in dealing with his patients.  He shares his passion for patient advocacy, hopes for a cancer cure, and a facinating and ongoing commentary on Japan on twitter at http://twitter.com/teamoncology

Kamis, 15 Januari 2015

Cancer Heroes: Our Oncologists

          In short:  they are terrific.  Laughing and cancer aren't the likeliest twins but we had a few (laughs, that is) during our hour-long talk.  
          A number of incredible moments -- completely unexpected -- evolved.  The show's producer, Patty Hall, had described the physicians' interviewing style as "intuitive and organic" and I was open to that.  Both doctors, I was honored to discover, had read an article of mine http://bit.ly/7Y6inK that was published last week by Lynn Lane on his web site for cancer survivors, http://voicesofsurvivors.com


         At one point Dr. Chachoua read aloud a few sentences I'd written about my Mother's death from cancer in l987:  
        "Sometimes the tools we have to help someone we love so much feel small.  Toward the end of my Mother's life, it was the offer of a wash cloth, a sip of Pepsi, an assurance that for this minute -- for right now, I am right here by your side.  The closer you walk to death the clearer this becomes."  
        Then Dr. Chachoua, a specialist in the treatment of lung cancer and recipient of an American Cancer Society career development award, talked about the deep loss he felt after losing a patient unexpectedly earlier in the week.
         In that instant the topic went from being facts, figures and numbers to a deeply felt moment by professionals who dedicate their careers, work 15 - 16 hour days, research and see patients in their quest to help find a cure for cancer.


         And in that instant I could not help but thank Drs. Chachoua and Formenti on behalf of all cancer survivors and their families.  Without physicians of their humanity and calibre we would be up the proverbial creek without a paddle.
        We walk minefields with our oncologists.  In so many cases we are able to celebrate and cross an imaginary finish line.  Sometimes it is not so happy, but there they are, extending their knowledge, and when we're very fortunate, an extraordinary humanity.
         My question to who:  who was the oncologist who made the difference in your journey?  Please comment and tell us about him or her.   I really look forward to hearing from you.


Links: http://www.sirius.com/doctorradio  www.voicesofsurvivors.com   www.curetoday.com

Rabu, 14 Januari 2015

Cue the Kellers

Lisa Adams is a stunningly articulate blogger and mother of three from New England who has suddenly found herself as the Rorschsach test for two prominent journalists who should have known better. The husband and wife team, Emma and Bill Keller, writing for the Guardian and The New York Times respectively, in the end tell us more about their own fears and experiences with cancer than they do about Lisa and her current difficult treatment for metastatic breast cancer.  She has currently been hospitalizaled at New York's Memorial Sloan Kettering Cancer Center (MSKCC) for almost two weeks now.

The two pieces of writing are disrespectful, inaccurate, and to return a word grenade lobbed by Emma Keller in her Guardian piece, "unethical."  Somehow both writers managed to conclude that Lisa is dying (metastatic and terminal are not synonyms), a huge assumption that isn't theirs to declare.  Most bloggers I follow, including Lisa Adams, pay more attention to accuracy than these journalists did. Keller, former executive editor of The New York Times, originally misstated the number of children Lisa has. Emma's piece has been removed from the Guardian "pending investigation."

There are many levels on which their "blame the patient" posts are so wrong but I'll stick with two: the gigantic misunderstandings surrounding metastatic breast cancer and a withering lack of savvy about social media and its role in fostering healthy epatient communities.  

Somehow, both writers have found the whole idea of patients writing about their experience, and how @adamslisa in particular does so, strangely offensive. Cue the Kellers with a big welcome sign to the 21st century!  Cue the Kellers: no one is forcing you to read anyone's tweets!  Cue the Kellers: ever since blogging platforms evolved we've heard from men and women about their disease experience and exchanging that knowledge with others. Cue the Kellers:  Peer to Peer Healthcare  published in 2011 by Pew Internet, a project of the Pew Research Foundation. 

For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy. We want hints on helping a phlebotomist find the sweet spot and ten ways of stopping nausea without Zofran. We want to find out more about genomic analysis and in when it's really helpful. No breast cancer patient is going to find these kind of essential details about treatment from the web sites of breast cancer organizations.  We find this info from other patients. The organizations may have been founded with the best intention to end disease but each is ultimately vested in its own survival. Patient communities, on the other hand, and patients within social media, exist to help educate and help each other. Patients share freely.  It is interactive, dynamic, and powerful, not a one-way street like a newspaper.

The understated nastiness of Bill Keller's "Heroic Measures" starts early. He refers to Lisa as  " ... a research subject and proselytizer for the institution" (MSKCC).  The subliminal shift to "research subject" shows where his perspective hovers about cancer. He constantly uses military language and metaphor, which isn't part of Lisa's style book. Bill Keller's perception of cancer is limited, naive and just plain stupid.  Women with metastatic breast cancer or anyone with metastatic cancer period can endure difficult periods of illness and pop back to tell us about it next month. Cancer treatment, even today with many advances, is grueling.  Earlier today I corresponded with a woman who has been in hospice three times. She isn't even 60. Yet Keller's point of view is based on this, "In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the Unites States,* patients are offered the option of being unplugged from everything except pain killer sand allowed to slip peacefully from life." If that's not enough, since Keller has already misread what Lisa has written about the palliative care she's receiving, "His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."
       
Wow.  He writes on from there for about two more pages. That basis is where Bill Keller's understanding of Lisa's situation stopped, if he ever had any understanding of her situation to begin with.  He extrapolates the experience of one (elderly? it looks like Keller himself is middle aged) family member with cancer to everyone with cancer and especially to that woman whose tweets annoy him.  It is a failure on an unforgivable scale.
 
Cue the Kellers: next time you want to write about cancer, take a look at your own stories.  Better, yet, just talk between yourselves.

                                                                            #   #   # 

*Thousands of patients in the United States are offered palliative care on a daily basis.  The UK doesn't hold a patent on this.  There is a weekly tweet chat on Twitter every Wednesday evening on hospice and palliative care under the #hpm hashtag at 8 pm CT.

Selasa, 13 Januari 2015

The Space Between

From: National Geographic.


Over the holiday I had the opportunity to join my friend's yoga class. She's such a good teacher that I transformed from feeling like a Christmas sausage into a sinuous being capable of anything. 

Yes, she's that good.  My feet were grounded.  I could feel energy gripping the mat through my heels and better yet, extending up through my core, through the density of interlaced scars and knotted tissue in my chest wall. There was a clean, clear stream line flowing along my arm that went through to the fingertips. And out.

As we slowed and folded into a meditative pose she suggested that we consider the space between breaths. Concentrate, she said, on the space between.

The space between. The phrase still resonates. I was like a child with a new toy, calling the words up and considering them or waiting, as they did one cold, crisp evening, to settle in my consciousness on their own accord. For every time those words land a sense of calm follows.  

The phrase works from the literal to the figurative. The space between is that glorious recess between Christmas and New Year's when the big events of the past year crystallize. The space between is a constant ebb and flow of life, as we navigate one day to the next, one challenge after another.  

For cancer survivors the space between can be highly charged or restorative. The space between can be time in between one treatment to the next. As Debbie Thomas wrote last week, it can be the time we need to to adjust, to reframe our identity from being a patient to being a "normal" working woman again.  


Cancer nipped my family badly this past year. There are times I suspect it will always be around, breathing down our necks. There were wounds and losses, recoveries and grief. The space between was an unexpected gift to me, to find my way with those losses, and discover my own way again. I hope you can find your space, too.


Wishing you love and all good things in this New Year,
Jody

Senin, 12 Januari 2015

What Not to Tweet

Every once in awhile even our favorite cancer institutions fail us.
            Most of the time those failures don't endanger us physically, but emotionally? What's a bit more anxiety for women with cancer?
            Today my frustration deals with the Call Back.  
            Not the polite "please have the doctor call me when he/she can" but the "we'll call you when we have the biopsy results" kind of call. Those calls. The kind of call you don't want to receive yet race to answer as soon as the phone rings. Right now, maybe even yesterday, when we were still naive, would be good.
            Immediately following my diagnosis I experienced a nightmarish before and after onslaught of thinking.  Images of what I was doing exactly the week prior, before cancer, danced unrestrained through my thoughts and filtered up from my dreams. Relentless unease, in other words.
            Right now I'm hoping our lives aren't bordering on another 'before and after' episode.
            Last week Steve had a core biopsy on his ear, in the area of his original melanoma. Consider this.  The original melanoma was removed and the margins were clear. Then it recurred. The recurrence was removed, and the margins were clear. He then had radiation. Following that he enrolled in an 18-month clinical trial testing a melanoma vaccine.  He is now five years away from the recurrence. As of this moment he's still five years away from that recurrence.
            But somewhere, someone had MD Anderson hasn't checked their voice mail with Steve's request for his test results. There are no snow days here. Failing to return patient calls can not be explained by the weather.  If there's one thing health care marketers could really do to improve patient satisfaction (which they ask you all the time) it would be to set up reliable patient notification systems for biopsy results. That such a simple procedure -- making a phone call to relieve someone's mind -- goes astray in larger cancer treatment centers is not just unacceptable, it's absolutely embarrassing.
            Two other points.
            From my experience I know that bad news will find you. Bad news hums through hospital systems, energizing the next days' surgical, diagnostic and treatment schedules. That's how healthcare works. Appointment books clear for bad news. The unavailable opens. Positive -- malignant -- biopsy results end up on the top of the pile. The phone rings. Negative, or the good, reports land God know's where.  While I suspect that Steve's report is benign I don't know this for a fact. And yes, if it were my test result, I probably would have started calling sooner, having surrendered anxiety for my better health some time ago.
            So right now I'm holding a tweet directed at MD Anderson, with copies to some of the key faculty leaders and public affairs managers. I understand social media, and how it can work from both a positive and negative sense. Outrage is always popular.  It wouldn't take long before the message to return Steve's call would fall in the right hands. Squeaky wheels get attention, it's true, but why let them wear down in the first place?
          
Thanks for listening,
Jody

Minggu, 11 Januari 2015

To 2011: More Cowbell



It's a new year, a new week, a new day.
        Yesterday Marie Ennis O'Connor asked her readers what three words they'd choose for 2011.  I was on my way to a meeting and couldn't stop to write, but I hastily tweeted one word:  distill.  Less is more in life and work.
        Let me explain.  Public enemy number one for most of us in our work lives is distraction. Hit one too many Twitter links and suddenly your most productive work hours have passed you by.  So to get my work accomplished staying focused is essential. That way I can move forward with my work and stay connected with my Twitter and Survivor communities.
        And something else. This past year I realized that more than half of my life is over.  t's a compelling recognition, a sobering one, and ultimately liberating. I know what I'm about.  Being engaged in meaningful work in the cancer and advocacy arena is my biggest priority. Yes, there are literally mountains I want to physically climb and places I'd love to visit, but at the end of the day helping to serve women with cancer is my greatest joy.
      You're familiar with the great phrase "more cowbell?" Well, here's to more joy. I can tell you that you'll find more when you pare you life down to what matters most.  Romp in the snow play, skip through streams  laugh until you cry. By giving up the fluff you get to go for the gusto.  Trust me.


I think the world of all of you.  Your loyalty, your continued awesome comments and insights, are the best Christmas gift I could have ever imagined.  Here's to you,

Jody

Jumat, 09 Januari 2015

January: Thrills & Chills


January got off with a bang, didn't it?  No sooner did we start drafting resolutions about eating healthy foods, exercising and getting organized than an arctic wave the size of Mars covered a great deal of the US and Europe.


In Houston this brings schools to a close.  On a closer note the cold brings more suffering to the homeless and many women undergoing chemotherapy.  Weakened immune systems mean additional precautions (wash hands, wash hands, wash hands), extra rest and nutritious foods. Why is it that the simplest things to do (rest, drink fluids, s-l-o-w and take care) are sometimes the hardest to implement?  Look at this  way:  if you are undergoing treatment for cancer or know someone who is:  these simple measures can be life saving.
There are lots of things on my mind today but here are the top two:


1)  It's not about the bra, is it?


If battling cancer were as easy as calling out the color of our lingerie (a new meme on FB, where everyone else knows and you are the last to find out) then a lot of people wouldn't need to work has hard as they do.  It ain't about your bra color baby, for breast or any other kind of cancer......or am I just being crabby?  One of the greatest things about this community of women is the ease in which we state our opinions, agree, disagree, and go on about our business.


2)  January:  Cervical Cancer Awareness


We know cervical cancer screenings save lives. Now scientists also understand that  HPV -- the human papilloma virus -- is responsible for the majority of  the 9700 new cases of cervical cancer diagnosed every year.  The new vaccine protects against four different strains of HPV.  The pap test though -- in and of itself -- has reduced cervical cancer rates in the United States by more than 70%.  That's something.  Below I've listed two excellent sources for you about cervical cancer:


  • The National Cervical Cancer Coaltion  http://www.nccc-online.org 
  • Tamika and Friends http://www.tamikaandfriends.org/ a grassroots effort by an incredible survivor and LiveStrong leader, Tamika Felder.  Both sources can help you get to where you need to go!
Next week I'll be talking about the big cancer stories of the last decade and a few resolutions we can all make to help unite ALL women with cancer. 


Love and blessings,
Jody


PS -- Loving the snow in Iowa over Christmas and having a blast.

Kicking off 2013 with Regina Holliday

One of the great assets of dipping into social is the opportunity to watch movements and events - from political uprisings to breaking news like Sandy Hook - take place.  Some flare then fall away. Others begin as a small spark and grow steadily until one tipping point after another is scaled. Then suddenly, everyone wonders what it must have been like before. 
          Regina Holiday is one of those sparks.  I've been following her work and advocacy for more than two years with sheer admiration for her guts, passion, intelligence and relentless determination to set things right.  Hers is so much more than, "I never want what happened to me to happen to anyone else," even though this is certainly part of her mission.
          That mission involves medical data, patient empowerment and making possible the movement toward centered patient care.
          Every hospital in the country is going to tell you they practise patient-centered care.  But patient centered care in its loosest definition, includes (not excludes) the patient's significant other,  an explanation of the patient's diagnosis and outlined treatment plan, a copy of that plan, an explanation of tests and procedures,  repeated as many times as the patient and significant other needs to grant approval. As I said, this is a loose definition.
          Regina Holliday and her husband, Fred, received none of this in a large hospital in the greater DC area in 2009.  From the bare outline of her story you'd think it was something from the dark ages.  It wasn't.  Her husband died on June 17, 2009, just two short months after being diagnosed with a Stage IV renal carcinoma.  This diagnosis had been missed -- the symptoms not even investigated - on four separate occasions.  In a major metropolitan area.  He was given antibiotics, then pain killers and told to go home.
         But  Regina and Fred's story doesn't end in tragedy.  It only begins there.
Little Miss A-Type: Regina Holliday's jacket. 
         Regina transformed her grief into action.  An artist by inclination and training, she documented their story in murals, paintings.  She spoke publicly, at prestigious patient conferences and symposiums. She became the visual reality of the epatient- "give me my data" movement that is part of the Society for Participatory Medicine.
         For all these reasons and so many more - we had Regina as our first guest for 2013 on #BCSM last night.  It was 60 bristling minutes of discussion about change, educating others, and taking charge of our own health.
        I've put together a Storify of the chat here and the full Symplur transcript here:
        When Regina asked the (alleged, my very obvious editorial judgement) oncologist for details about her husband's diagnosis, her referred to her as Little Miss A-Type Personality. 
         Little did he know he was messing with the wrong woman.