Letters After My Name… An introduction.

Twenty-six letters makes up the English alphabet.  From those letters, we form words, sentences, and messages.  Letters have meaning.  They allow us to communicate (You just read this, right?).  They torture us with their rules (“‘I’ before ‘E’ except after ‘C.'”).  When joined together and associated with one’s name, though, they seem to convey greater and sometimes misleading messages.  While it would be easy to get lost in a Seinfeld-esque (“‘I’ before ‘E’ except after ‘S’ apparently) way in terms of how letters modify one’s name (Ms. versus Mrs.; Judge versus “Your Honor,” etc.), one’s analysis should really be focused on the story and not the titles decorating a name.

When an upperclassman threaded my medical school white coat (a shorter version of an Attending Physician’s white coat) onto my arms and I took the Oath of Hippocrates publicly for the first time, a friend summarily commented that it would be difficult for me to have my name properly embroidered on my coat when I was one day granted an “MD” because others schools had previously conferred a “BA,” a “JD” and an “MBA.”  This concern was quickly diluted by the myriad things that I had to worry about as married, oldest-in-my-class, practicing lawyer, first-year medical student.

After my daughter’s safe arrival, something on one of the white coats that briefly entered my wife’s labor room made me consider the physician’s white coat that I believed would one day hang both in my closet and on my shoulders.  It was at that sleepless, overjoyed, and relieved moment that I realized I wanted at least one white coat that said, “Benjamin S. Albert, MD, JD, MBA, DAD.”  I knew that the “DAD” part represented the most important title with which I have ever been blessed, and I also knew from a practical point, it would be a good discussion point for breaking the ice with a nervous patient.

Letters after one’s name – whether “Jr.” or “Ph.D.” – can inform.  But, they fail to tell a story.  If a university grants a degree, does it say the recipient did well?  Hardly.  If someone shares their name with their great-grandfather, grandfather, and father and a “IV” is adhered to the end of their surname, does this suggest love among generations or simply ego?  Similarly, if one has a JD after their name (or, inappropriately, “Esquire”), does it mean that they will zealously advocate for you or that they have the skills to be your lawyer?  Definitely not.  A number of people complete the requirements for a graduate degree without ever gaining the skills to successfully do the associated job.  I have often observed (and sparred with lawyers who proved my view) that a baboon (no offense to any baboons reading or to baboons, generally) can get through law school.  It doesn’t mean that they’ll be a good lawyer.

More concerning is that there are a number of stories that are not being told because the absence of letters after one’s name suggests that the experiences never happened.  What if, for example, you managed to complete your prerequisites for medical school, actually get accepted into medical school, and then because fate intervened in a negative way, the long sought-after “MD” is never bestowed?  That’s what happened to me, and I can assure you that my decision to withdraw from medical school did not take away the patient’s lives that I helped save, the unique experience of dissecting every inch of the human body, the gifts of trust and confidence given to me by patients and their families, the privilege that I had helping patients complete their life’s journey, the helicopter rescue missions, the suturing and stapling of wounded skin, the nurturing of broken hearts, or the fact that for almost four years, I did wear a white coat.  And a stethoscope.  And most importantly, a promise – Dr. Albert Schweitzer’s promise – that:  “Here, at whatever hour you come, you will find light and help and human kindness”.

No one can take away the lessons that I have learned, the experiences that I have had or the gifts of friendship and love that patients gave to me during this chapter of my life.  And maybe, if you keep reading, I can share some of those experiences and some of the lessons that came directly and indirectly from patients and caregivers.  It is not just about the letters after my name….  It is about all the stories that make me who I am.

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Doing Good and Doing Well

Years ago, I helped organize a lawyer’s event – a fundraising ball for the Boston Bar Foundation.  The keynote speech was delivered by Jeffrey Swartz, the President and Chief Executive Officer of The Timberland Company (“Timberland”) (www.Timberland.com).  Yes, the boot company. 

Mr. Swartz was funny and engaging.  He was passionate and hopeful.  He was inspiring.  He’s a young guy, who arguably has benefited from the lucky sperm/egg club by becoming the third generation of the Swartz family to lead Timberland.  (Grandfather, Nathan Swartz, invested in the predecessor company of Timberland in 1952, and his dad, Sidney, continues as Chairman of the company.)   I still remember his message:  In essence, “doing well and doing good” in business are inextricably linked.  He expounded a level of corporate responsibility that few companies – especially publicly traded companies that are beholden to shareholders – ever achieve.  Timberland (stock ticker: TBL) not only “talked the talk” but under Mr. Swartz’s leadership has consistently “walked the walk.”  Few people preach corporate responsibility like Jeff Swartz.  He believes and demonstrates that justice should guide commerce and that profit and purpose should be married.

Think about the companies that you do business with personally or through work, i.e. the entities to which you give your money.  Do they espouse beliefs that you are proud to support?  More so, do these companies that grow with your financial support – either through direct investment like stock purchase or by buying their products at a local store – make positive choices; choices that enhance our society in ways far greater than merely increasing the wealth of investors?  Do they simply do what is right?  I think that we should ask – no, demand – more.  And when companies fail us, we should point that out and ask them to do better. 

Acknowledging that I have already given attention to a commercial venture, something this blog never intended to do, I am going to violate that rule even more below.  Because, when a business does right, when a corporate enterprise personifies good, we should recognize it, thank the people responsible, demand that they continue on that path…, and then use them as an example to inspire change in other businesses.

A couple of weeks ago, I was in the midst of my morning routine.  While showering, 105.9 FM’s (www.theriver1059.com) morning music show was interrupted by required commercials.  The second commercial, for NewAlliance Bank, caught my ear more than most that are happily drowned out by the water flowing over my head.  The advertisement contained a reference that I found offensive.  While digesting the concept, the music restarted and I found myself singing the words of “Viva La Vida” along with the band members of Coldplay (great song to start the day!).  And, I forgot about the advertisement.

The next day, repeating my ritual, NewAlliance Bank’s same advertisement trickled into my shower, mixed with my Ivory soap, and left me feeling dirty for ignoring the advertisement when it filled the airways 24 hours earlier.  You see, the advertisement featured a man and his buddy in a bar or club.  The man becomes so excited about free checking that he takes to the dance floor.  In response to dance skills probably not so different than mine, ladies are heard saying, “I think that he’s having a seizure.”  [Insert laugh track.] 

My sister died from a seizure.  So, as some can understand, I did not find humor in this unnecessary attack on people with epilepsy and other seizure disorders. 

To the medicine man in me, I was concerned by the final punch line of the advertisement.  After the ladies on the dance floor call for 911 assistance, the man in the ad ultimately comments something like, “Boy, those defibrillators really pack a punch.”  Seizures are not treated with electrical shocks to the heart, and I would hope that no one listening to the advertisement would carry the intended joke into an emergency situation.  People sometimes do dumb things under pressure.

As I dressed, and then ate breakfast, and then witnessed my dog do his business outside, I considered my options and decided that I should do my business; that is, I should do my small part to ensure that NewAlliance Bank (www.newalliancebank.com) conducted their business in a better way.  I researched to identify the person in charge of marketing for NewAlliance Bank.  When I found Mark Gibson, I telephoned and left a message with his assistant (doing my best to convince her to have him call me back). 

Within a short couple of hours, Mr. Gibson telephoned me.  He listened patiently.  He asked good and caring questions.  And, when I volunteered to cut our conversation short, acknowledging that he must be incredibly busy, Mr. Gibson demurred and kept me on the phone to ensure that he fully understood my concerns.  He assured me that he would review the advertisement.  Mr. Gibson’s response sounded genuine, and left me feeling satisfied that NewAlliance Bank would consider the raised issues.  At that moment, I decided not to pursue the matter more.  I discarded the telephone number for the Epilepsy Foundation of Connecticut (www.epilepsyfoundation.org/connecticut) and also decided not to reach out to our major newspaper’s columnists.  Mr. Gibson had left me satisfied.  A bank that really cares?  It certainly seemed that way.

The next morning was punctuated by the FedEx man ringing the doorbell at my house.  To my surprise, the envelope contained a three-paragraph letter signed by Mr. Gibson, Executive Vice President – Chief Marketing Officer for NewAlliance Bank.  In his letter, he reiterated that NewAlliance Bank was taking seriously my concerns about the “Dance Machine” radio spot.  Again, there were no false promises to change the bank’s marketing plan. Rather, he simply verified that the bank was reevaluating the advertisement, and that he was working with his outside advertising agency (they were copied on the letter).

Again, I decided that Mr. Gibson and, by his actions, NewAlliance Bank had acted appropriately.  They had demonstrated – with just a few small acts like listening, responding, and being empathetic – that their customers matter.  The matter was again closed.  Or, so I thought…

Five days later, a visit from an old friend was interrupted when my mobile phone erupted with the Hartford Whaler theme song (the Brass Bonanza).  It was 4:45p.  I was more than surprised when the caller announced himself as Mr. Gibson.  He informed me that effective that day at 5:30p, the “Dance Machine” advertisement would be pulled and no longer used.  (I literally got chills.)

We all make mistakes.  NewAlliance made one in using the “Dance Machine” commercial.  But, NewAlliance responded in a way that would make Jeff Swartz proud.  The bank has done well financially and in terms of growth.  In fact, it is expected that NewAlliance (NYSE: NAL) will merge with First Niagara Financial Group, Inc. (Nasdaq: FNFG) in April of this year.

Now, I have no idea if Mr. Gibson is representative of the people at NewAlliance.  (Though, I got a good sense of his humanity during our conversations, and I cannot imagine him working with people who do not share his view of “doing good.”)  And, I cannot predict what will happen post-merger.  But, I can hope – and I can move more of my business to NewAlliance – to help ensure that “doing well and doing good” are inextricably linked … and to help ensure that the Mark Gibsons of the bank survive the merger, and continue to drive the new banking entity in a manner that is both good for its shareholders and for the rest of us.

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Martin Luther King, Jr. Prescription for Doctors

I met Monique when she came in seeking my supervising doctor’s help with depression and anxiety.  Not an uncommon “chief complaint” at my medical student continuity site, I was caught off guard when the doctor shared Monique’s story in the seconds before he opened the door to greet her.  I did not have a moment to digest her tale or to prepare myself for our meeting.  I was relieved that the doctor skipped his canned “Benjamin-is-a-medical-student-with-me-today” introduction and immediately pulled his awkwardly small, physician chair closer to Monique in an almost knee-to knee position.  I sought shelter in a corner of the small examination room.  I did not want to be there, and I certainly did not want Monique, who I immediately liked, to have to be there.  It felt like one of the longest patient encounters that I ever shared…. 

Fast-forward three months and Monique has returned to the doctor’s office to follow-up on how she is feeling and how she is tolerating the prescribed antidepressants.  This time, though, I notice her name – my brain a second slower than my mouth – and blurt out that life has not been fair to her.  I remind her doctor of my feelings about the man who inflicted her pain.  In response, he sends me in to see her alone.  Unlike any other clinical meeting, I did not want to be in there.  Last time, the room was simply too sad and I had struggled desperately to prevent the moisture in my eyes from boiling over as tears.

After knocking on the door, I entered and found Monique seated.  She had a new, more youthful haircut.  I stumbled to find my voice and remember my name.  Monique smiled hello.  I had not seen her smile before.  Her bright white teeth, framed by a damaged smile captured her status:  A woman trying to look ahead while indelibly tied to the past; a smile of hope corralled by a scar of loss.

Monique confirmed that her medication was helping but admitted that she still became very sad sometimes.  She relayed a recent episode:  While driving, a song by Luther Vandross came on the radio.  As soon as she recognized the tune, she started to cry and had to pull over and collect herself.  I took my first real gamble and decided to use my own life’s experience to try and help Monique understand the long road of grief that she is traveling.  Though I never told Monique about the death of my sister – the loss of my only sibling when she was 19 and I was 17 – that experience allowed me to help Monique understand that it was ok to be sad; that in fact, it would be strange if she was not sad.  I also tried to teach her to be happy without guilt when those moments surprised her.

Our conversation became very fluid.  She was, by all accounts, doing better.  Her blank stare was gone and had been, at various moments during our encounter, replaced by a real twinkle in her large, puppy-like eyes.  The empty affect had been replaced by tears and laughter.  Monique was learning.  She was doing better.  She chose to live, and the living had started.  Of course, when your husband and children have been murdered by a drunk-driver, and you have been left with traces of a traumatic brain injury and a scarred face, this would be only the beginning for Monique; part of the maze to healing. 

I explained that letting tears flow when Luther Vandross sings a song that her husband once sang is good.  When I asked about her husband’s ability to carry a tune, she laughed – a real laugh, and acknowledged that he was a terrible singer.  Sensing something spiritual about this wonderful Jamaican woman, I cautiously talked about signs from something bigger than us.  I never mentioned G-d or religion but we seemed to connect.  She sensed where I was heading and asked me if I thought that Luther Vandross could be a message from her husband.  Without a real answer in my arsenal, I bounced the question back to Monique, and she seemed pleased to think that it was a connection with her husband.

We remember Dr. Martin Luther King, Jr. this weekend and celebrate all that he did to heal and advance a nation.  I cannot help thinking that he had doctors in mind when he said:

“We must combine the toughness of the serpent and the   softness of the dove, a tough mind and a tender heart.” 

Yes, our physicians must learn the gritty details of the human body, but they must also learn to be good listeners.  They must be strong and feisty in the battle to fight disease, but they must also be tender and loving to those with broken souls.

As patients, we must demand that physicians be both the serpent and the dove.  After all, Monique is counting on that.

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New year is a health opportunity!

Given the time of year, it is not surprising that many people are talking about New Year resolutions. There are many articles written about being successful in achieving these January promises. I’m no expert but what I learned in medical school convinced me that change comes: (1) only when you’re ready; (2) when you focus on one thing instead of making an unwieldy list; and (3) when the goal is achievable (e.g., for most people, committing to an hour of exercise EVERY DAY is creating a setting for failure). I do, though, think that more than resolutions, we must all achieve real change. Too many of us don’t exercise enough, don’t consume enough fruits and vegetables, and have (at least) a few extra pounds on our skeletons. This time of year reminds me of the devastation caused by Type II diabetes that I saw during my medical education, which made it clear that we can avoid being part of sight-robbing, limb-chopping, and death-causing epidemic. It also makes me think of Wade…

Exiting the room, my attending physician turned right to exam room 9 (cough) and I veered left to exam room 7 (“follow up on hypertension”). Left in our wake was the decimated spirits of Wade, who seemed to flood exam room 8 with his sorrow and shock.

This was the first time that I had met Wade, and I liked him immediately. Sure, I noticed that he was morbidly obese. And prior to my knock and entry, I had noted that his hemoglobin A1c (a long-term measure of one’s blood sugars) was impressive in the worst sense of the word. And yet, his demeanor was disarming and his smile was infectious. Being with Wade made me feel like I was sitting next to a pleasant stand-up comedian who was taking a cigarette break at the bar.

 All joking – and smiling, in fact – came to an immediate end when Wade’s doctor joined us and pulled the proverbial rug from beneath the examination table and the 260 pounds that fused to form Wade. This appointment was to determine if yet another diabetes medication could be added to make a difference for Wade. Though the first few minutes of the conversation were peppered by comments from Wade that confirmed that he knew that he “needed to keep a better eye on what I ate, “ and that he should “probably get some exercise to help his diabetes,” it was clear that he had not acted on his thoughts.

Wade was not the train wreck that most physicians speak about. The train had departed and instead, Wade was now walking a slow march to his grave, leaving behind a wife and two teenage daughters. When the doctor, in the plainest of words, expressed his dire concerns about Wade, you could actually feel the train hit a brick wall in the distance. I felt like the oxygen was being sucked out of the room as Wade took a long, slow, pitiful breath, and tried to absorb his physician’s assessment. If Wade did not make significant changes, his life would include limb amputation, loss of eye sight and likely a heart attack or stroke. The picture was the most bleak that I had ever heard the gentle family doctor who I worked with describe.

Reviewing the plethora of drugs that Wade swallowed every day, the doctor poked the end of his Gardasil™ pen in the corner of his mouth and shuffled through Wade’s voluminous record. Catching upon a previous note, the physician asked Wade about an earlier conversation that they had about gastric bypass surgery. Wade remembered and could only articulate that he had not pursued this remedy for possibly removing diabetes from his life because his wife did not like the surgeon that had been recommended (she works in the office of a competing surgical practice). Stunned by the lack of follow-up, the doctor reiterated that this was not only the best option for Wade but could possibly be his only option. As Wade digested the news, absorbing the gravity of his situation with each tick of the doctor’s wrist watch, the doctor suggested a meeting with Wade and his wife to address her concerns. No medications would be changed that day. Diet and exercising counseling were not discussed in the context of helping Wade’s diabetes. Rather, Wade was reminded that the suggested surgeon would not perform the gastric reduction if Wade did not demonstrate the ability to live on a diet, to exercise and make other modifications in his life.

Wade and his doctor seemed to share common thought on his plan. A long second of silence passed when Wade erupted like a happy puppy that just smelled a treat: “What about Weight Watchers? My daughter just lost over a hundred pounds!” Maybe, I thought, he just was not getting it. We reminded Wade of the many years that he has had to make meaningful changes in his life, reviewed his laboratory results, and re-directed this sinking ship to a meeting with Wade and his wife.

We said our goodbyes. I wished Wade luck, and he responded that “it sounds like it’s too late for luck.” Emitting an uncomfortable and nervous laugh in response, I followed my attending physician into the hallway. While reviewing the chart for the woman waiting in room 7, Wade came out and scheduled the meeting. When Sue, who coordinates the doctor’s schedule, asked long-time patient Wade how he was doing. He twisted his face into a pretzel of a smile and responded, “Well, I’m not dead yet.” Sue, unaware of the conversation that had preceded his appearance at her cubicle ledge, noted: “Well, that certainly beats the alternative.” Wade, without looking back, littered words behind him that – when put together – conveyed his sense that death was near. I can only hope that the meeting with Wade and his wife, scheduled on an upcoming evening, provided Wade with both a dose of optimism and recognition that he does have options. After all, I like Wade, and I would hate for him to let his diabetes kill him.

Wade had many opportunities to follow through on New Year resolutions. It’s never easy, and I don’t blame him. I just realize that it is important that we all take stock of our health, and make necessary changes. For the record, I’ve given up all fried food. Happy New Year!

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Shout “Boobs!” Not “Boo!”

“Boo!”  No, “Boobs!”  As many around the country prepare to dress up in costume, politely ask for candy (isn’t “Trick or treat?” really just culturally condoned blackmail?), and yell, “Boo!”, I’m thinking that we should take a moment and instead yell “Boobs!”  It is, after all, the final moments of the Breast Cancer Awareness month of October.  Although raising money to find a cure and raising awareness about the importance of early detections are 365 day/year activities, it is this month that we see NFL football players wearing pink (www.nfl.com/pink), Ford Motors hawking “Warriors In Pink” clothing in addition to cars (www.shopwarriorsinpink.com), and the memory of Susan G. Komen being bravely used to raise millions of dollars for research, education and support (www.komen.org). 

This is Breast Cancer Awareness Month, and I have spent the entire month trying to tell one story.  This story.  A story of bravery.  A story of love.  A story of survival.  My friend’s story.

Twenty-two years ago, my soon-to-be-friend’s mom was diagnosed with breast cancer.  She delayed treatment only briefly so she could host out-of-state youth group guests, including me.  As a result, I met a wonderful girl and we became friends; a friendship that remains today.  After enjoying some true Midwestern hospitality, I returned to Connecticut and Rachel’s mom had a single mastectomy and then endured chemotherapy to ensure no rogue cancer cells remained in her body.

Though Rachel and I did not speak about it at the time, I now know that she understood that there was an increased risk of her one day facing cancer.  In truth, most of her energy was spent being scared about her mother and the very real fear that cancer would kill her mother.  Fortunately, her mom responded well, and was deemed cured after a set number of healthy years passed.

More fortunately, Rachel’s mom and her physicians remained vigilant in her post-diagnosis years.  Nineteen years after her battle with cancer, Rachel’s mom was diagnosed with breast cancer a second time.  (Who says life is fair?)  These rogue cells required a second mastectomy.  Her mom, though, was spared the unfairness of chemotherapy during the second event.

Though the exact timing is not clear to me, sometime around the second diagnosis, Rachel’s mom pursued testing to see if she was genetically predisposed to breast cancer.  The math was easy, if she was negative and she was not a carrier, she could spare her two daughters from undergoing the stress of being tested and waiting for results.  Rachel’s mom’s results?  Positive.  She was a carrier for a mutation to a BRCA gene, which is part of a class of genes known as tumor suppressors.  (See http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA for more information.)  What could be scarier (not in the Halloween way) than thinking you could lose your mother to breast cancer not once but twice?  Perhaps, knowing that you and your sister could be at risk for the same genetic mutation….

Rachel and her older sister were tested.  Both tested positive.  And at that moment, my friend, Rachel, went from being the 15-year-old who once had a crush on me (Full disclosure:  I once had a vested interest in her breasts.) to being my hero.  She accepted the scientific news that her risk of developing breast and ovarian cancer was greatly increased.  She didn’t bury her head in the proverbial sand as many people do when faced with bad medical news and tough choices.  She planned her life.  She worked with her husband to decide on a child-bearing strategy.  This news, after all, arrived five months after their second son was born.  That was five years ago. 

To his credit, her physician husband joined Rachel in avoiding what seemed like shallow body image concerns (Obviously, every woman would view these issues differently, and I offer no judgment… just Rachel’s perspective) and focused on keeping his wife alive and safe.  “Fear was not going to stop me from saving my own life,” Rachel recently told me while acknowledging that the positive test was horrifying.

As she faced surgery, Rachel knew that great reconstruction options existed, and unlike many women that I have met, who fairly are concerned with losing some part of what they define as their “womanhood,” Rachel was only concerned with the little people in her life.  She summed up her view poignantly:  “Was I worried about what my boobs would look like?  No.  I wanted to ensure that my kids were not orphans.”  So, with that in mind, Rachel and her husband put a broad plan in place:  1.  Determine how big of a family they wanted; 2. Finish having kids; and 3. Live within Rachel’s physician’s directive to have the necessary surgeries by the time she turned 35.  Thirty-five???  These are decisions that no one should have to face.  But, they are certainly moments that should be reserved for someone at least twice her age.  Again, a hero in the making.

With the making babies part complete, Rachel’s ovaries were surgically removed 12 months ago.  The ovaries went first because ovarian cancer is nearly impossible to detect until it reaches late stages.  Even in the world of cancer, it’s an unfair disease.  Without her ovaries, she has, in essence, undergone premature menopause.  She had to deal with hormonal changes, a little moodiness, some mild body temperature changes, and ultimately hormone replacement therapy (“HRT”).  She did so without complaint.  All the while, Rachel kept life in perspective.  Hot flashes (and she claims hers “weren’t so bad”) be damned.  She was focusing on living.  And looking back, she is grateful that her surgery had no complications.  It’s only after I remind her about the “pee bag” that she laughs and drifts momentarily back to the life with a catheter.  Though surgery went well, her bladder was nicked, and until it was healed, she had to wear the “pee bag” that was threaded into her urethra.  Her kids would exclaim, “I can see your pee!”  You have to find humor to survive life’s biggest challenges.  Maybe that’s one of the silent lessons that Rachel wants to share.

Six months after surrendering her ovaries, a surgeon removed both of her breasts.  Though it has been only been six months since undergoing a radical double mastectomy, Rachel is not disturbed about the changes to her body.  “I don’t have nipples right now,” she admits.  But, “I’m not a nude model so who is going to see them?”  I think that she undersells what she’s been through.  Though technology and progress has brought mastectomies to a different level, it is still a process.  She woke from her first breast surgery with “expanders” in place to help prepare for the reconstruction phase that took place in July.  In the end, she jokes that after four kids, her “boobs look better than ever!”

Was her decision, the right decision?  For Rachel, absolutely.  “Being able to be here for my kids as long as they need me… removing one thing that won’t kill me” made the tough decisions much easier.  In fact, my hero friend Rachel, is inspiring about her experience.  “It was empowering to take control against something like cancer.”

Rachel learned other lessons through her personal anti-cancer campaign.  First, pain is bad.  Second, it’s hard to be dependent on others for everything.  She did have moments of feeling helpless (and ultimately “bliss when I could fold my family’s laundry for the first time.”)  Third, this takes a toll on those people that love you, especially one’s children who do not totally understand what is going on with mommy.  (Frustrated, her son once said, “I’m going to hit you in your surgery.”)  With a very special husband, loving parents, understanding children and truly remarkable friends, Rachel survived the period when she physically could not pick up anything, when she couldn’t clean, grocery shop, drive carpool or make a meal.  If it takes a village, Rachel lives in a very special Florida village.

Rachel is healthy and feeling good.  Her energy flows through the phone even when we spoke on the phone today.  She’s learned lessons that she should not have had to, though.  She talks about an “awakening” that took place throughout the process of protecting her body.  She appreciates the little things like “not being in pain, not needing pain medications, and all the little things that make life so great.”  She is a mother to four wonderful children: seven, six, three, and 20 months! 

Two of her kids are girls, though.  They might have a BRCA1 or BRCA2 gene mutation.  And while Rachel hopes that they won’t have to make decisions because maybe her kids will live in a cancer-free world, she hopes that they will make the right choice and be tested.  “I’m not a gambler,” Rachel confides, and “I hope my girls aren’t either.”  Her girls – and, in fact, all four of her children – will not have to look far to find an amazing role model.  And, hero.  (I know I have.)

She doesn’t know it, but I always cry when I hang up the phone with Rachel.  I can’t always explain why.  But, today, I cried because it is Breast Cancer Awareness Month and that 15-year-old that let me touch her boobs in her parents’ basement so many years ago now has the most grown-up message for women:  “Be aware.  Be strong.  Take charge.  Know your risks and do something about it.”

There are still things to be scared about. Rachel’s sister, as mentioned above, tested positive for a mutated gene.  She’s older, just welcomed another child to the world, and does not seem to have a plan in place to avoid the horrors of cancer.  I don’t blame her.  But, I do join Rachel in worrying about her.   But then again, I wear a pink ribbon my heart every day because I worry about all the women and girls in my life.  As October comes to an end, I hope you’ll think of Rachel’s bravery, and the moms/sisters/aunts/daughters/grandmothers in your life, and make sure that we continue to fight cancer – breast, ovarian and all others – so that our children read about the terrible disease only in history books.

Special thanks to my dear friend, Rachel, for letting me share her story.

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Forgetting Hero

It’s strange how one story can lead to another.

After reading a post here (http://bit.ly/a1G2nz) about CPR and the second chance that my friend, Dena, gave a young girl, my friend, Jeff, emailed to remind me that he was given a similar second chance. His story of nearly dying because he was choking – literally choking – on a hotdog at the Ruth L. Chaffee Elementary School Carnival Night had a happy ending. He’s alive. He’s a successful Manhattan talent agent. He got married to a wonderful woman. He has two adorable children.

The other part of the story, however, does not have a happy ending. It is heartbreaking, in fact. Jeff was rescued by one of the neighborhood moms, who happened to witness the hotdog attack on Jeff’s trachea. Irene, who trained as a nurse and spent part of her professional career practicing that loving trade, knew that Jeff was in trouble and she knew what to do. Without Irene? No Jeff. No Jeff’s wife. No Jeff’s children. And our neighborhood would have been both decimated and devastated by the loss of one of our favorites.

Irene lived life filled with manic energy. She worked more than one job; not because she had to but because she enjoyed doing so. In fact, at one point, she was doing pharmaceutical sales for two companies (without either knowing it!). She raised two great children, and maintained a loving relationship with her husband of now 43 years.

I have heard it said that when a person dies, the light of their candle, while extinguished, can still shine if we tell stories about them, remember them, and hold them in our hearts. If this is true, then in Irene’s case, the fire atop her candles burns bright but the light does not break the darkness. She has been fighting, and I think now fair to say, losing her battle against early-onset Alzheimer’s Disease.

Dementia of any kind is cruel. In the early stages, it has the unique ability to worry the afflicted person by causing them to second-guess their decision-making process. It steals keys and jewelry. It hides phone numbers. It blurs addresses and blocks the correct route home. It’s just plain mean.

As the disease progresses, it consumes short-term memory, preventing people from realizing that they are repeating themselves, that they have not eaten or bathed, or dangerously, that they have not turned off the stove. Scary, right? Well, it’s even more horrifying because it causes fear. It creates an Oliver Stone-like suspicion of others (remember Jessica Tandy accusing Morgan Freeman of stealing from her in “Driving Miss Daisy?”). Worry takes over: Family members cannot be trusted; physicians must be conspiring to take away freedoms; and the world is simply out to get you. Or, so I have been told by patients who are trying to run from the illness.

Perhaps the cruelest part of dementia is the confusion that it showers on loved ones who are forced to watch someone’s mind erode while their body is maintained. It just does not make sense. We can understand – even if our hearts reject the meaning – when disease destroys cells, organs and bodies. It is far more difficult to comprehend how a healthy looking person is fading mentally. Where are they? We want to believe that our loved one is still “in there” somewhere.

From my vantage point, Alzheimer’s Disease is not represented by the proverbial emotional roller coaster. It has no peaks; only valleys. If one must analogize, then Alzheimer’s is like the water flume: you just go down, and your boat fills with the tears of unfilled dreams, heart-broken loved ones, and a life lost to unanswered questions.

According to the Alzheimer’s Association (www.alz.org), more than 5.3 million Americans are living with this progressive and fatal brain disease. My dear friend, Irene, is one of them. The disease is destroying her brain cells, which results in memory loss, cognitive challenges, and as was the case with my Nana, will eventually cause a premature death. Alzheimer’s, which is the most common form of dementia and accounts for approximately 70% of all dementia cases, is the seventh leading cause of death in the United States. Though there is no known way to prevent Alzheimer’s (yet!), a number of studies are investigating the influence of mental fitness, physical fitness, diet and environment. Drugs are helping slow the disease progression, and the evidence seems convincing that early detection – as is true with most diseases – has benefit.

I’m honest enough to know that we will hear a eulogy for Irene before a cure is found. But I also realize that there is a great deal that all of us can be doing. First, encourage Congress to pass the National Alzheimer’s Project Act (S. 3036/H.R. 4689), which would require the government to create a national plan to solve the Alzheimer’s crisis, known more personally as Irene’s crisis. (For help writing a letter visit: www..kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=6239707.) Second, you can donate money. Money translates into research, advocacy and support. (Visit www.alz.org/join_the_cause_join_the_cause.asp to figure out how to financially help.) Finally, you can walk (or pledge to support someone who is walking) in a Memory Walk, which are held in all 50 states. Want to be part of Irene’s Memory Walk? Join her family on October 24 in New Jersey. Or, let the internet do something remarkable today and make a donation ($5, $10 or more!) to www.memorywalk2010.kintera.org/greaternjchapter/skeyles in honor of Irene’s fight.

 Irene saved Jeff’s life. I don’t think that she remembers that anymore. But, if we do something to fight Alzheimer’s, we will prove that we remember. And maybe, just maybe, she’ll know that the light of our many candles are shining on her, creating a path for her to find comfort, hope and love. This disease will inevitably take Irene but it will not take the wonderful memories that we have of her as mom, wife, friend, and even heroine.

Special thanks to Irene’s daughter, Sherry, for letting me tell this story.

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Magical Pediatricians

Ysabel, my daughter, is three years old, and my son, Dylan, turned three months yesterday. With each passing day, sleepless night, running nose or milestone, I am more amazed at how much I now appreciate what parents mean when they say, “If only my child came with a guidebook or manual.” The mystery of children, I find, is only enhanced when you place them in a medical office. Sure, the stickers at the end of the visit seem to make sense to all involved. And yes, I think all can agree that swabbing in search of evidence of strep throat is a jarring experience at any age. Beyond that, though, I remain in awe of the pediatrician (and family doctor who fills that role). That awe is coupled with an acknowledgement that, in medical school, I morphed into someone who did not want to be a pediatrician; a decision that I realized was probably for the best.

I have long recognized that being an effective pediatrician requires an exhaustive (and exhausting) set of skills normally identified in a magician, a therapist and a physician.

The magician must make fire with her penlight and allow the otoscope to be extinguished when, in a blow-out-the-birthday-candles manner, a child exhales carbon dioxide and spit in a robust burst. She must use the slide-of-hand common in magic to allow a proper inspection of a child…or, if all else fails, wave the toy-du-jour in the air as a distraction. She must employ tricks that are, as they say, trade secrets.

The therapist must listen to parents not just in terms of understanding her patient, but must listen, sometimes, just for the sake of listening. Parents, I have noticed during my brief time in the pediatric zone, have lots to talk about when someone is willing to listen. Captive (adult) audiences may be hard to come by when a parent is struggling to balance life with children. Of course, even those parents who are no happier to be in the germ-infested pediatrician’s office than if it was them on the receiving end of the immunization smorgasbord of the day, seem to have a lot to say and ask. This part, I get. In the case of caring parents, concerns over the most minor issues get elevated to Level Orange on the Homeland Security Advisory System. A loved child is precious, and because that manual of care does not exist (Did Dr. Spock really know what he was talking about?), parental anxiety is understandable…but no, you’re child still does not need an antibiotic for every viral illness! And yes, I’m quite sure that it is not an issue if your child cannot recite the Gettysburg address by 18 months of life.

The physician role in the multiple-personality disorder that is required to be a pediatrician is by far the scariest. Sure, if your tricks fail, the kid cries for a few minutes. He’ll get over the cold stethoscope and the sting of the MMR vaccine. If the therapist just does not have the patience to listen to how the family pet did in the Westminster Kennel Club dog show, there will always be the next “well visit” in 3 months or the next “sick visit” next week to hear about it. But, if the physician fails, the ramifications are beyond – for me, as a parent – comprehension. It is my understanding that, for the most part, pediatricians treat healthy children. Certainly, these doctors see a plethora of ear aches, tummy aches, sore throats and rashes. And while these maladies may seem traumatic to both child and parent, most childhood issues seen by the pediatrician are resolved with rest, a confident dose of reassurance and maybe a dropper full of ibuprofen. The physician under the cloak of the pediatrician’s multi-colored robe (hey, colors make kids happy, right?) is the ultimate gatekeeper. If she fails to detect papilledema, a cardiac murmur or (in this day) the early signs of autism, the results can be catastrophic. Sure, all doctors carry similar responsibilities and risks. And, I do not think that one could argue rationally or philosophically that a child’s life has more value than an adult life. But, doesn’t it sometimes or in some way feel that way? I would have to argue yes.

Said another way, the emergency room doctors expect the worst, and look for it. A good pediatrician has to avoid being lulled into a sense of bad-things-don’t-happen-to kids. They can treat weeks or even months of bumps and bruises, coughs and runny noses, and pooping and peeing issues. They have to be even more vigilant in looking for the terrible brain tumor or childhood disease. If they miss it, no one else catches it until it is often too late.

It was with these feelings and fears shadowing me that I had to respond to my attending physician’s question in the spring: “Follow-up on 83-year old hypertensive in Room 8 or do a seven-year-old physical in Room 9?” Having had my share of hypertension for the day (I can always tell when I reach that point when my own systolic pressure hits a certain abnormal threshold!), I ventured onto the proverbial thin ice and opted to meet Courtney. I had seen her in the hallway staring intently to decipher Snellen’s secret code of “E-C, D, E, F, L, N, P, T, Z.” She had skipped to the designated viewing position (“one shoelace dangerously untied,” said the parent in my evolving brain). I stood amazed at her enthusiasm. I cannot remember the last time that I skipped or even had reason or temptation to do so. With her vision test charted by the nurse as OD 20/25 OS 20/30, Courtney excitedly ventured toward the bathroom with a plastic cup in hand. Moments later, and still prior to my introduction, she returned carrying the prized cup of pee as though it was a truly valuable possession.

Hesitant to enter, I perused Courtney’s chart (again!). She seemed like a medically unremarkably kid, who had survived to the age of seven with only a few bumps and bruises. When I knocked, I heard a triumphant “hello” squeak over a more adult voice. Both mother and daughter welcomed me into the room and into their lives.

Almost immediately, I found myself distracted by Courtney’s face, which was sprinkled with adorable freckles, her smile, which highlighted that the tooth-fairy had recently paid her family a visit, and the careful way that she repeatedly brushed her hair behind each of ears in preparation to speak to me. She was fun, and immediately made me feel at ease (strange how that works!). Her responses and stories were delivered machine-gun style, with her words peppering me with no interruption. I did not have to wonder about lung capacity based on her ability to string 52 words together without ever inhaling. After an extensive history, which was both entertaining and informative, I set out to practice my clinical skills. Head and scalp cleared, I moved to an inspection of her eyes. I can only assume that someone was filming me for “Americas Funniest Videos” when I repeatedly tried to have Courtney follow my finger without moving her head. With each attempt, she giggled with the infectious force of influenza. Ultimately, this task could only be accomplished with me holding her chin in place.

Courtney proved to be a great audience, and for that I was grateful. She laughed when I looked in her ear and asked her about the dog I saw in there. While looking into her left pupil, she became very focused when I commented that I could see that she had a very smart brain. (It was unsettling to hear her confidently say, in further response, that “I’m going to be a scientist” when I’m still trying to figure out what I’m going to be when I grow up.) Her lungs were the clearest, healthiest and, in some ways, the most beautiful sounds that ever filled the earpieces of my stethoscope.

During the exam, she continued to question me like a trained patient-instructor. I think I passed.

In the end, Courtney’s physical examination was normal and I reported that and my historical findings to her pediatrician in the hallway. Back in the room, her doctor repeated her heart and lung examinations, declared in her good health – based largely and in a very scary way on my presentation, signed a camp physical form and chatted briefly before bringing the session to a close. I put my hand out to Courtney for a high-five and instead she repeated one of the cerebellar exams; this time trying to keep my fingers from spreading apart. I explained the confusion and she laughed, commenting with great confidence, “Why didn’t you just say, ‘High five?’” At that moment, I felt like telling her the truth: I was not really that comfortable with physical examinations, pediatrics or anything related to medicine. I felt like telling her that I was spending most of my time at that point just trying to get the physician part down pat and that the magic of my doctor-child interaction would have to wait. I felt like admitting to her that I’ll be leaving behind the waiting room littered with saliva-coated toys and dog-eared books (how many times is it possible to “Pat the Bunny?!?!”), the injections to unsuspecting kids, and the symphony of coughs and screams to people like my friend, Dr. Lu Lu Waterhouse. She’s a kid at heart; she gets it, and she’ll be a great magician.

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We Can Do Better (without the R-word)

Those who know me would never accuse me of being politically correct. Besides the “N-word,” though, there is one word that crosses not just “the line” but a line that should never be crossed.  It is generally misused and incredibly offensive and insensitive. In medical school, I thought it was particularly inappropriate for future physicians to say things like, “You’re so retarded,” when they meant, “You’re so stupid.” Mentally retarded and being stupid have no connection, and we should all endeavor to break the slang connection. Or, aim higher and remove the word entirely from our vocabulary (notice I didn’t use it in that sentence!). (You can visit http://www.r-word.org to “spread the word, to end the word.”) Learning this week that the United States Congress has provided President Obama with legislation that, in essence, removes the word “retarded” from federal laws (http://wapo.st/cuRfVU) reminded me of Tim, one of my patients….

People in medical school, often those doctors whose facial landscapes are peppered with age lines and brown spots, liked to joke that they didn’t see me as jaded…yet. The joke is the “yet” part. Technically, I think these folks are wrong. When I looked up the word “jaded” after the last such encounter, I was surprised to find that “cynical” was part of the definition. Never one to cling to optimism or pessimism, I have always thought of myself as a cynical realist. More than a decade of lawyering, a dose of life’s greatest unfairness, and a few too many nights in various emergency departments have left me in that state. But, jaded? I never thought so. Being jaded has a different ring to it. It suggests apathy, disinterest and even a shade of pessimism. Jaded, I was not.

But then, my genetics lectures intervened. All of a sudden, the sun rose, the sun set and someone taught us about “normal” babies and “normal” children and all of the abnormal other kids. Abnormal? Who were they to say? We listened to information about genetic mutations and exogenous teratogenetic exposure. We talked about children in terms of their syndromes, not their names. We ignored the fact that the grotesque, naked mug shots that appear in our genetics textbook were snapshots of someone’s children, and instead learned to associate certain dysmorphological characteristics with an extra chromosome.

When we discussed options for parents who find out that their child is going to be “sick,” we were regularly reminded to counsel parents about abortion (even though we never talked about the impact of abortion). We were focusing on test results and not the magic of a child who, though not normal by medical standards (or apparently medical school standards), could be a wonderful son or daughter. I was troubled by the conversations we were having in our conferences and the paradigm of our education but said nothing, hoping instead to focus enough on remembering that only conceptuses with Trisomy 13, 18 and 21 had the potential to survive to birth, in order to pass our upcoming exam.

My weekly clinical preceptor, Dr. G., is a big guy. Consequently, when we saw patients together I was sometimes not tall enough to get an intake-form preview of our patient. Also, because of his size, I encountered our patient a full second or two later than he does. In essence, he eclipsed the view of the room and it was only when he moved to the side to introduce me that our patient was revealed.

One Tuesday, like a puppy on a short leash, I followed Dr. G. into Exam Room 5 to meet our 4:15 appointment. The list of the day’s patients indicated that Tim’s chief complaint was “swelling and pain on his hand.” When Dr. G. moved aside, I first encountered a pleasant, professionally-dressed, smiling woman standing next to the examination table. As Dr. G. moved further into the room, I met – actually just saw – Tim. Tim had all of the classic signs of Down Syndrome. Even as I shook his hand, I critically analyzed Tim. In the slow-motion-like-moment that followed, I heard nothing of the conversation between Dr. G. and Tim’s mom as information about Down Syndrome flooded my mind: more than ninety percent of live births with Down Syndrome are caused by an extra chromosome 21; Robertson translocation was possible; nuchal translucency could have been detected on an ultrasound; during the first few months of pregnancy, amniocentesis or chorionic villus sampling could have been done to the fetus that had evolved to become Tim. I was struck by the classic dysmorphology that Tim exhibited. (Truthfully, I had forgotten his name was Tim for the moment.) I wondered if he had heart problems, whether his hearing was deficient and where he fit on a spectrum of functioning. Instead of worrying about Tim’s reason for seeking care, I was caught up in the ugliness – the very failure of those lectures to remind us that when we speak of disease, illness or even difference, we are speaking about people not things – of genetics lectures. (For more information on Down Syndrome or to become an advocate, visit www.ndss.org.)

Pain brought me back into the examination room. When Dr. G. lifted his wounded hand, Tim emitted a sound that confirmed his discomfort. His mom offered a frustrated half-hearted laugh when she acknowledged that she was unaware of anything happening to Tim’s hand on her watch, that his day program did not have an explanation, and she said, “As you know, Tim can’t tell us.” Though I had surrendered initially all of my thinking ability to Tim, my thoughts were subsequently owned by his mom: Did she know that Tim would have Down Syndrome when she was pregnant? How was life for her and her family? Was it, in essence, worth it for her? For Tim? Did she feel any different about her son than I do about my daughter? (I doubted so.) Thoughts of her, and Tim, made my half hour drive home that night feel like a minute. I struggled with my initial reaction – the one that I was being trained to have: I saw Down Syndrome. I did not see Tim. And, I did not see that he was in pain. For a time, I failed him. As I continued my commute homeward, I remembered a poem that offered an antidote to the cold, uncaring genetics education. I couldn’t remember the name of the poem but the superpowers of Google’s search engine coupled with my hazy recollection that that poem included reference to Italy and Amsterdam allowed me to find it (see below, “Welcome to Holland”).

In the end, I recognized that seeing patients was an undoubtedly good place to take my own pulse and see if I was becoming jaded. I had a better idea of why those aged physicians laughed when noting that young students will one day become jaded. That jaded monster sits waiting for you in the most unlikely places. That day, I added additional items to my list of things-to-do: 1. Pick up diapers; 2. Prepare problem-based learning concept map; 3. Read about vasodilation; 4. Fight to avoid becoming jaded; and 5. Remember Tim. The moment that we forget that people are, regardless of their physical or mental challenges or gifts, just people, we fail as humans. And, I know that we can all do better. In the end, those of us who chose to use hateful verbiage like the “R-word” are the stupid ones.  As for Tim, he was certainly smart enough to teach me a great deal. 

“Welcome to Holland” by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …

When you’re going to have a baby, it’s like planning a fabulous vacation trip … to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And the rest of your life, you will say, “Yes that’s where I was supposed to go. That’s what I planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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