A Husband’s Thoughts on Cancer

Those of you who have read my blog know that my first cousin, Laura, was diagnosed with HER2+ breast cancer in 2012—and that just a year and a half later, she felt a lump in her neck, which led to the devastating news that she had metastatic recurrence to her lungs, liver, and multiple lymph nodes.  She immediately began treatment again, this time for metastatic breast cancer (MBC).

Fortunately, she responded incredibly well to her combined targeted HER2 treatment with Herceptin and a newly approved HER2 targeted agent, Perjeta, and was found to have no evidence of disease (“NED”) since October 2014.  But as she explained in her blog, in the spring of 2015: “I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on, I had to be very close to the screen.  In my former life, I would have chalked it up to [being] tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI.”  And it was then that she learned her cancer had metastasized to her brain, with 18 lesions that were too poorly differentiated for localized gamma knife.   She therefore underwent whole brain radiation and, later, following the development of more brain lesions, gamma knife procedures.   In March of this year, Laura wrote the following about her most recent scans:  “’My body has no visible cancer right now.  Yea!  My brain has five tiny lesions that aren’t a big enough deal right now to treat.  Yea…..? This is a ‘great report’ from both of my brilliant docs.  Grace is my interior screaming, ‘What Kind of Fuckery is This?*’ while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.”  (*As Laura explained, “It’s what Amy Winehouse sang so gorgeously in ‘Me and Mr. Jones.’  ‘WHAT KIND OF FUCKERY IS THIS?’  I love curses I’ve never heard before, especially when they fit a situation so well.”)

Also in March, Laura’s husband, Jon, wrote a deeply moving post on his Facebook page that brought me to tears.  In the days that followed, my thoughts kept returning to his words, and it struck me that far too many people have never heard such thoughts from the loved ones of women or men living with MBC.  I therefore contacted Jon to ask whether he would be willing for me to share his post on my blog, explaining that I had two reasons for my request.  First, there was no doubt that his words would deeply resonate with so many.  And second—and so importantly—his post could go far in educating others who have far too many misconceptions about MBC.  Jon graciously gave me his permission, and so, without further ado, I’m honored to share the following with you today.

Jon and Laura

Jon Graves and Laura Snyder

“My Thoughts on Cancer” 

“Every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC).  Laura has been living with metastatic cancer for just over 33 months, which happens to be the median life expectancy for someone with MBC.  This statistic could be a little skewed, since there are a couple of new [targeted] drugs (Herceptin and Perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer.  She is [also] on chemotherapy and will continue on chemo of one type or another for the rest of her life.

“Right now, Laura has five brain mets (tumors) she is just walking around with.  They are very small, so her radiation oncologist just wants to wait before doing a procedure.  But this is me telling facts and not feelings.

“Ever looming is death.  Metastatic cancer is the cancer that kills.  So death is the first thing that is always lurking.  Every three months, she has scans, and we see if there is cancer in the body or in the brain.  Her cancer likes to invade her brain.

“But beside the big thing (death) is the human trait of planning ahead.  Thinking of the future.  Our future is lived in three month scan cycles.  But at the same time, I think about what is happening in ten years when I’m in my early 60s.

“My birthday is next week.  I will turn 53.  My Dad died when he was 52.  I have been afraid of 52 for a long time.  Laura made it past 52, and it looks like I will,  too.  But it brings up lots of emotions–especially the long-lasting void left for my wife and kids, who never met my real Dad.

“What is it like living with metastatic cancer (from a caregiver/observer view)?  Day to day can be good, generally is good.  Dog walks and amazing dinners.  Laura is cooking more than ever before in our marriage, and the food is amazing.  But there is a knot in my stomach, a catch in my throat, when someone talks of retirement or the future.  I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser (?) or whatever the dating app of choice is.  Will I be looking for someone to retire with in 15 years, or will Laura be there by my side?  Like everything in life, I just don’t know, but my mind wanders to the uncertain future late at night or early in the morning.

“I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain.  There are interesting and potentially life-saving drugs out there in trials that could make all the difference in the near future.

“Am I a bad person for making jokes that she can’t remember something?  She does not have nearly the cognitive abilities that she had five years ago.  Brain radiation will do that, as well as years of chemotherapy.  Her eyesight changes every few months, and she needs new glasses lenses, but I taunt her for not being able to see …  I know, I suck and should be better, but I can’t help making jokes about what is hard.

“We are thinking and dreaming of building out on our Knappa land above Big Creek.  It is great to think about moving out there when I retire, but what does that really mean–am I with Lu or alone?

“If you have read this far, please do not worry about me.  I am the same ebullient, happy-go-lucky fellow you know.  At times, I think too much, just like my lovely wife.”

Thank you, Laura and Jon, for allowing me to share this post.  I recalled that in an interview for the blog “Voices of Metastatic Breast Cancer,” when Laura was asked to share her favorite poem or song, she responded by saying that The Beatles ‘Ob-la-di, Ob-la-da’ really resonated with her in this phase of her life, as did Lucille Clifton’s poem, ‘Blessing the Boats.’”  I’m therefore sharing the below as a way of expressing my gratitude to you both.

blessing the boats

BY LUCILLE CLIFTON

                                    (at St. Mary’s)

may the tide

that is entering even now

the lip of our understanding

carry you out

beyond the face of fear

may you kiss

the wind then turn from it

certain that it will

love your back     may you

open your eyes to water

water waving forever

and may you in your innocence

sail through this to that

Lucille Clifton, “blessing the boats” from Blessing the Boats: New and Selected Poems 1988-2000. Copyright © 2000 by Lucille Clifton. Reprinted by permission of BOA Editions, Ltd., http://www.boaeditions.org.

Source: Blessing the Boats: New and Selected Poems 1988-2000 (BOA Editions Ltd., 2000)

Ob-La-Di, Ob-La-Da

 

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Immunotherapy Part II: Understanding the Unique Spectrum of Adverse Events

In last week’s blog, entitled “Cancer Immunotherapy: a Patient’s Perspective,” I discussed the increasing excitement concerning new immunotherapies for patients with advanced and difficult-to-treat cancers, the need for caution in interpreting results while the data is still young, and the necessity for more mature data with much longer follow-up on an increased number of patients.
Part II of this blog series, now posted on The American Journal of Managed Care’s Contributors Page, continues on this important topic, focusing on why it is so critical for patients and their caregivers to understand the unique spectrum of adverse events that may be associated with these agents.  Unfortunately–and unsurprisingly–when reporting on the potential benefits of immunotherapy, some in the popular media have stated that there are “few to no side effects” associated with such therapies.  Though immunotherapies are typically not associated with the same adverse effects seen with chemotherapy regimens, “The Promise of Cancer Immunotherapy: Why Patient Education is Critical, Part II” outlines why the statement “few to no side effects” does not tell the entire story and may be extremely misleading for patients–and emphasizes the information that must be shared with patients before beginning any immunotherapy treatment.
tcells

 

Doth the Lady Protest Too Much? The Bruce and Caitlyn “Jenner-ization” of the Nation

This blog posting has a bit of a different focus than my blogs typically do.  But I have a rule: if something causes me to throw back my head in frustration or to start talking to my computer screen or TV, that means I need to write about it—if only to work out my irritation, to reach some type of catharsis if I’m fortunate, or to come to a conclusion that may even have a pearl of wisdom buried within.  So I sincerely apologize if any of my wonderful readers takes offense to anything I’m about to say—but please do stick with me to the end if you can.

So here it goes.  If I see one more article about Bruce/Caitlyn Jenner’s “rocking a gorgeous white Versace gown,” taking “a walk on the wild side when she stepped out” in a leopard-patterned wrap dress in New York City, or “conquering her fear of swim suits,” I’m going to start screaming, and I may not stop.  But as you’ll see shortly, my rant here is not so much about Caitlyn, but rather about what I’m calling today’s “Jenner-ization” of America.

At the age of 12, with the rest of the country, I watched in admiration when Jenner set the world record in the decathlon and received the gold medal during the 1976 Montreal Summer Olympics.  And his win was certainly exciting in the moment.  But I didn’t quite understand why so many seemed to worship him so–and for so long.  After all, having received his gold, he retired immediately after taking his victory lap around Olympic stadium.  Even he has joked that “Nobody has milked one performance better than me—and I’m damned proud of it.”  And years later, after moving to Newtown, CT, I learned some not-so-admirable facts about Jenner, making it even more difficult to consider myself a fan of the former athlete.

A bit of background first, and then on to why Jenner has not been Newtown’s favorite son for some time now.  The fact is that Jenner lived right here in Newtown, and this is where he spent his last 2 years of high school.  In addition to competing in track at Newtown High, Jenner also played on the football and basketball teams, and he was voted Most Valuable Player of Newtown’s track squad.  He attended his senior prom with the young lady who became the wife of Newtown’s former first selectman.  And a few months after winning the gold medal in Montreal, Jenner returned to Newtown to attend a ceremony at Newtown High, during which they christened “Bruce Jenner Stadium.”  Just a few months later, tragedy struck the Jenner family:  his younger brother, who was just 18 years old, was killed in a car accident in Canton, CT while driving Jenner’s Porsche, which had been a gift to celebrate the Olympian’s success.  Though some speculate that his brother’s tragic death may be at least part of the reason that Jenner appears to have kept his distance from Newtown after that time, his name remained on the Newtown High School stadium for nearly 25 years.

And here’s where many Newtownians’ opinions of Jenner changed.  Former Newtown High School principal, William Manfredonia, told the Danbury New-Times that in 1997, school officials repeatedly tried to contact Jenner–whom at that time was living a charmed life as an actor, announcer, and motivational speaker–asking “for both financial and moral support” for a $400,000 renovation to the stadium.  Manfredonia said that “I wrote to [Jenner] twice to see if he could help, and I even called, but I never even got the courtesy of a reply letter.”  Michael Kelley, who was then the president of Newtown High School’s Blue and Gold Booster Club, also made repeated calls to Jenner while working with the club to help raise money for the new stadium.  “I never spoke to him personally, but I called his office and home numerous times,” Kelley told The News-Times. “His wife told me he was involved in other commitments and was not able to help us.”

At that time, I was a relatively new resident of Newtown, and my husband had already been living here for many years.  We were both enamored and protective of our sweet home town.  Needless to say, upon learning that Jenner did not even have the common courtesy to pick up the phone to return a call, let alone contribute to the stadium that bore his name, we were outraged at first and then simply disgusted.  Apparently, he simply was not interested in contributing to the warm, sleepy town where he honed his athletic skills.  Nor did he appear to have any inclination to help with a renovation to the “Bruce Jenner Stadium,” so that new generations of young men and women could develop their own athletic skills and perhaps go on to reach some semblance of the fame, fortune, and success that he had achieved.  Of course, it was completely within his right to choose to spend and not to spend his fortune in any manner that he wished.  But the result was that many of us who love Newtown lost a great deal of respect for him, the man who was Bruce Jenner at that time.

So that was that.  In October of 2001, the school board unanimously approved a name change for the stadium, calling it the “Blue and Gold Sports Stadium,” and they also renamed the athletic field behind Newtown High School as the “Harold S. DeGroat and Ann Anderson Sports Complex.”  Speaking to The News-Times, long-time Newtown resident Joan Crick said that “the stadium never should have been named after Jenner; it should have been given the name of Harry DeGroat, a long-time high school sports coach and physical education teacher, who died nearly 40 years ago. ‘He did so much for the town and is remembered by so many for his work and achievements,’” she stressed.  Kelley somewhat agreed: “I think we made the right decision in choosing his [Jenner’s] name for the stadium at the time, but over the years there hasn’t been a connection between Mr. Jenner and Newtown.”  The high school stadium, which is still known as the Blue and Gold Sports Stadium, contains a plaque listing the names of the many people who contributed toward the stadium’s improvements.  One former Newtown resident’s name is notably lacking.

Fast-forward to the very different world in which we live today.  So now you know why I have not considered myself a fan of Jenner for some time.  I just happen to think that not deigning to take a phone call from an official of your former home town—a town that honored you and celebrated your accomplishment by putting your very name on their stadium–was simply a rotten, thoughtless thing to do.  But as hinted earlier, that’s not why I’m writing this blog: what prompted me to do so is my concern for what’s been happening to our beloved country.

Before you start shaking your head, thinking that I’m a transgender-phobe (is that a word yet?), that is absolutely not the case.  If Bruce was miserable being Bruce and is truly happy now being Cait, I’m genuinely happy for her.  There is far too much suffering and pain in this world, and it’s always a wonderful thing when people are able to make changes that result in their leading much happier lives.  Also, I truly hope that by sharing her story, Cait is able to provide comfort and hope for those who are currently struggling with gender identity–and perhaps help to prevent some of the terrible experiences that impact so many transgender youth, such as family rejection, harassment, discrimination, violence, and other severe stressors that may contribute to the high suicide attempt rate among transgender people.

But sadly, with that said, it certainly appears to some of us that this is just as much—or perhaps much more–about Bruce doing what he wanted to do and making a pretty penny than it is about a strong sense of altruism and genuine concern for others.  Rather, for many, this seems more like another episode (literally) in our country’s current sensationalized reality TV show culture.

When Diane Sawyer asked Jenner (who was not yet going by Caitlyn) about whether this was a publicity stunt for the “Keeping Up with the Kardashians” show as many in the public were convinced, he rolled his eyes, laughed,  and sarcastically said the following:

Jenner: “Ohhh noooo, we would never do that, Diane! Are you telling me that I’m going to go through a complete gender change, okay, and go through everything you need to do [for] that for the show?  Sorry, Diane, it ain’t happening, okay? Yeah, we’re doing this for publicity … yeah, right.  Oh my God, Diane, do you have any idea what I’ve been going through all my life, and they’re gonna say that I’m doing this as publicity for a show?  Oh my God.  There are lots of shows out there.”

jenner

Sawyer: “Yes, but there’s a shameless selling of everything these days.”

Jenner (now leaning forward and pointing at Sawyer): “And I get that, but what I’m doing is going to do some good.  We’re going to change the world.  I really firmly believe that we’re going to make a difference in the world with what we’re doing.  And if the whole Kardashian show and reality television gave me that foothold into that world—to be able to go out there and really do something good, I’m all for it. I got no problem with that.  Understand?”

“Understand?” My goodness!  It would be difficult not to regard Jenner’s tone and body language as sarcastic, didactic, and just downright rude.  And it was interesting to me that he kept using the word “we.” Wouldn’t one who was genuine about what he was saying use the word “I”?  Doesn’t his use of the universal “we” seem a bit contrived and suggest that he was referring not so much to his family members, but rather to the “cast members” of the Kardashian television show?  Perhaps the lady doth protest too much?

Yes, in my humble opinion, she “doth.”  Over the last several weeks, every single time I’ve gone online to conduct a search on Yahoo, there were not one, not two, but several stories about Caitlyn.  It was the day when I saw six, yes, SIX of these stories listed one after the other that I’d had enough.  And what did these “news” stories cover?  Let’s see: where Jenner went to lunch; how “stunning!” she looked while wearing “a tight black dress”; how stylists everywhere are finding “her classic and timeless hair and makeup flawless”; and the fact that she was excited about @Caitlyn_Jenner stealing the “Twitter crown” from @BarackObama by receiving 1 million followers the most quickly (where Caitlyn’s reaction was a squealing “Let’s go for the record! I love records!”).  Good grief.  Doesn’t this non-stop, frivolous, “glam” coverage about hair, nails, make-up, and social media highly suggest that much of this is about furthering celebrity and piling up those pennies?  And how about the fact that Jenner called a “family meeting” to break the news about his transgender plans to Kim, Khloe, Kylie, and Kendall Kardashian–during which E! cameras were rolling to capture the moment for an upcoming episode of “Keeping Up with the Kardashians”? What was that you said about publicity?  “Ohhh noooo, we would never do that, Diane!”

But for many, perhaps worse yet was when the media, Hollywood, and many others started throwing around the word “Hero” to describe Jenner’s transgender transition.  The icing on the cake was this quote from Kanye West, the husband of Kim Kardashian, when speaking to Jenner about her transition: “I think this is one of the strongest things that have [sic] happened in our existence as human beings, that are [sic] so controlled by perception.  You couldn’t have been up against more.”  Besides being barely understandable, really?  In my humble opinion, it’s difficult to reconcile “hero” as an appropriate term here—and I’m certainly not the only one who feels this way.  Just one example is former Virginia Beach Navy SEAL, Kristin Beck, who has not minced words concerning the manner in which Jenner is revealing her transgender transition.  In an interview with NewsChannel 3, Northeast NC, posted on May 13 this year, Beck bluntly stated, “He’s no hero.  I’m seeing too much of that money-grubbing reality show crap.”  Two years after retiring from the Navy, Beck revealed her transgender transition in a 2013 interview with CNN’s Anderson Cooper.  Beck strongly feels that Jenner’s approach to spacing out bits and pieces of information is less than helpful to the LGBT community.  “He’s keeping everything secret and parsing out information to fish out another 17 million viewers to make another million bucks.  It’s shameful, and you’re not a hero if all you’re doing is trying to make money.  You can’t be an example if all you are is just that reality show machine.”  Beck has written a book on her transgender journey and created a documentary called “Lady Valor.”  She explained that “I took the road where I made a documentary, did everything real quick, and just said, ‘Hey, here it is; here’s the information if you want to know about it.’  And now I’m going to universities and speaking for free at colleges and universities all around the country.  I’m barely breaking even, but I’m trying to show people who we are as normal folks, as something you can look and say, ‘Okay, I can understand it.’”

Beck, who is running for Congress in Maryland, emphasized that “There are kids, transgender LGBT kids who are killing themselves every day because they have no hero to look up to.  They see no future.  They feel isolated, and this could have been a really good example of what you can do and could have saved some lives.  But instead, you’re going to make a few bucks.  Disappointing.”

And concerning Kanye West’s statement that Jenner “couldn’t have been up against more”?  It is terribly sad that Jenner was unhappy for so long.  But Jenner became a celebrity many moons ago, had more opportunities than most in this life, and was immediately  buoyed and supported by other celebrities when he revealed that he was now Caitlyn.  Just to name a few examples, singer Demi Lovato dedicated a song to “American Hero, Bruce Jenner.”  Celebrity after celebrity tweeted their support to Jenner after her Vanity Fair cover, Culture Club’s audience gave her a standing ovation, and she is now surrounded by dedicated hairstylists and assistants to ensure every hair is in place and every outfit is “stunning.”  So Jenner “couldn’t have been up against more?”  In all seriousness, isn’t it time to stop the sensationalizing, the rubber-necking, the lowest-common-denominator impact of reality shows on our true reality?  The popular media has played a disgraceful role in this, with the result being more and more people who are “famous for being famous”—the Kardashian sisters, Paris Hilton, Nicole Richie, and on and on it goes.  Instead, imagine what a better world this could be if the media paid much more attention to the TRUE heroes all around us–many of whom in reality “couldn’t have been up against more”?  For example, wouldn’t you like to learn more about the following remarkable people?

Unsung Heroes in Our Midst

  • Do you recognize the names Ali Viator Martin and Jena Legnon Meaux? I did not hear a single news story about them and only learned of their bravery due to my brother-in-law’s discussing what had happened to them.  The two teachers were recently watching a movie in Lafayette, Louisiana when a gunman opened fire in their crowded theater, killing two people and injuring nine others, including Martin and Meaux, who were both shot in the leg.  One of these brave teachers immediately threw herself on top of her friend when the shooting started to protect her from the ongoing gunfire.  The other managed to drag herself to a fire alarm and pulled it to alert everyone in the building of the danger.  The overwhelming majority of the news coverage focused on … (you guessed it) … the motivations of the killer, who shall remain nameless here, rather than on these two brave women who undoubtedly saved many lives.

beaux-and-martin

 

  • Have you heard the name Kimberly Koss? She is a biomedical scientist, mother, and grandmother who delayed her treatment for a particularly aggressive type of breast cancer (known as triple negative breast cancer) to donate her tumor cells for research.  Speaking to Yahoo! Health, Dr. Koss explained that “This will be tremendously helpful in figuring out what causes this type of cancer and how to treat it…Every day, that gives me hope.”  Her friend and colleague, Dr. Keith Jones, is heading the research team at Loyola University Chicago Stritch School of Medicine, where they are using Koss’s tumor cells in an effort to create an immortal cell line.  Crucial for cancer research, immortalized cell lines are a population of cells that would normally not proliferate indefinitely yet, due to mutation, are able to evade the normal loss of the ability to grow and divide and therefore can continually proliferate.  Such laboratory-grown human cells, which may be cultured in mice, are critical for testing theories about the underlying causes of and treatments for cancers for translation into clinical advances.  Koss’s cancer was highly invasive, with the cancer cells’ undergoing cell division rapidly, making them good candidates to successfully proliferate in cell cultures.  However, chemotherapy would have damaged the tumor cells, making them less likely to survive in cell culture.  For triple negative breast cancer, many basic questions remain, and though there are some triple negative cell lines available for research, these tend to be from patients who had received chemotherapy prior to removal of the tumor.  In addition, as Dr. Jones told Medscape Medical News, Koss’s cells contain mutations not seen in the other cell lines.  “This will allow us to confirm that the cell lines used for study reflect the actual tumor tissue the way it was in the body, before it was extracted.  This is an opportunity we did not have before.”

Due to Koss’s decision to donate her tumor cells to research, she started to receive her chemotherapy after her mastectomy rather than before surgery.  Her chemotherapy therefore was started more than two months later than her doctors had recommended.  (For triple negative breast cancer, presurgical [neoadjuvant] treatment is often recommended in an effort to shrink the tumors and improve patient prognosis.)  Dr. Jones confirmed that some of Dr. Koss’s tumor cells have been growing in culture for about six months, but explained that another six months or so are required to determine whether they have successfully established an immortalized triple negative breast cancer cell line.  Though this is extremely encouraging news, there is also upsetting news: Dr. Koss’s breast cancer has now metastasized to her chest wall and lungs.  She also has developed cardiotoxicity secondary to her treatment, including early-stage cardiomyopathy and heart failure.  In speaking of his friend, Dr. Jones noted that, “It’s always a little scary to hear a friend say they were taking a chance on something that could cost their life or health.  I don’t know if, in the same situation, I could do the same.  It’s very brave.”  He also emphasized, “Part of her legacy will be what this does for other women.”  Now THIS is an American hero.

Dr. Kimberly Koss

Dr. Kimberly Koss. Loyola University

  • Did you know that more and more Americans, many of whom are veterans of the Iraq War, are volunteering on their own and creating several emerging groups to fight alongside local Kurdish Peshmerga forces and Christian militias against the terrorist group ISIS in Iraq and Syria?
  • What about the cancer researchers who are devoting their hearts and souls to developing life-saving treatments, while quietly struggling to keep their labs and their critical research afloat as available grant funding continues to disappear? Heroes in my book.
  • And those patients with cancer and other life-limiting or terminal illnesses who participate in clinical trials, understanding that there may be little or no direct therapeutic benefit for themselves and a very real possibility of significant harms, yet who do so for the hope of future patients? We all owe them a tremendous debt of gratitude: true heroes.
  • What about the young spokesman for Shriners Hospitals, the adorable little boy with the huge heart with whom so many of us have fallen in love? In his role as a Patient Ambassador, 12-year-old Alec Cabacungan has brought Shriners Hospitals to the attention of countless folks who before were unaware of the critical orthopedic, spinal cord injury, burn, and other specialty care they have provided to over a million children regardless of families’ ability to pay.  Cabacungan has been diagnosed with osteogenesis imperfecta, a genetic disorder characterized by bone fragility, and he has been affected by more than 50 bone fractures in his young life.  Shriners Hospitals’ “What is Love?” campaign has brought Alec’s radiant smile into millions of living rooms across the country, with the goal of bringing further charitable donations to help support Shriners’ ongoing critical work.  Alec, all of the other Patient Ambassadors, their families, the clinical staff and researchers at Shriners: heroes.  All of them.

alec

alec shriners

  • How about the millions of folks across our country who serve as caregivers for family members—for their children, spouses, adult parents, or siblings–with terminal or life-limiting diseases, including cancer, Alzheimer’s disease, and other dementias? Being a primary family caregiver can be one of the most emotional experiences one may have: it’s often physically, psychologically, and financially draining, stressful, frustrating, upsetting, and it’s never easy.  Yet for so many families, it can also be deeply rewarding and joyful.  As Edward Albert said so eloquently, “The simple act of caring is heroic.”
  • And though I could go on and on, I cannot conclude here without including the volunteer firemen in our communities, often our friends and neighbors, who run toward burning homes, buildings, World Trade Center towers, rather than running away like most of us, risking their own lives to save ours. Our American Heroes.

No, winning an Olympic gold medal, becoming a reality television star, and undergoing a transgender transition in front of the rolling TV cameras do not a hero make.  But today, as I was again trying to ignore the deluge of stories about Jenner’s gowns, swim suits, and latest trips on the town, I saw a short article for the very first time that specifically described what they called Jenner’s transgender activism and her concern over the high suicide rates seen in the transgender community.  Is it possible that over the rush of applause and the flashing cameras, Jenner has begun to hear the words of folks like Beck and to recognize that it’s not all about glitz, glam, celebrity, and cash?   Perhaps she has started to recognize her privileged status and what true struggle is like?  Might she start to worry less about the dress and direct the full focus and determination she had shown so famously as an Olympian to help the next generation of transgender youths feel less isolated and more hopeful?  Dare we hope that she, the media, and so many in our reality show culture will finally begin to recognize that it’s not what transpires in front of the cameras and what’s seen in the public view, but rather, as John Wooden famously said, that “The true test of a man’s character is what he does when no one is watching”?  We shall see.

Preserving Hope: Our Caregivers’ Journeys in the World of Cancer

Many folks might not understand this.  But I’ve lost track of how many times I’ve thanked God that I  and not one of my loved ones was the cancer patient.  After being diagnosed with lymphoma shortly after college, cancer shaped my life.  As I’ve said many times, being a cancer survivor has impacted every adult decision of my life: staying in a job that I disliked far too long due to fear of being without health insurance, my decision to become a medical writer, when to get married, and on and on.   But I’ve had to be matter-of-fact about this.  Cancer, its late effects, what seems like my bimonthly thyroid biopsies, the number of daily pills I’ll always have to take, my long list of specialists—it’s simply my reality.  But that’s okay.  Long ago, I subconsciously made this one of my roles: I took on the role of cancer patient, the one with the chronic health issues in my family, with the understanding—or perhaps more accurately stated, the magical thinking—that I gladly accept this role to protect any of my loved ones from EVER experiencing cancer, cardiac issues (another of my late effects), or any serious chronic health issue.  My message to myself was “I’ve got this.  I’ve got my family covered.”

Magical Thinking

My mother helped me to understand this at a more conscious level just last year, one which was  very difficult for my family.  I have two female first cousins, one on my mother’s side and one on my father’s side—and in one year, they both were diagnosed with stage 3 HER2+, ER+ breast cancer at the age of 49.  I was never angry about my own cancer diagnosis: the first time, my thought always was, “Well, why NOT me?,” and the second time I’d long understood that I had a greatly increased risk for breast cancer due to my radiation treatment as a young woman.  But when I learned that my first first-cousin had just been diagnosed, I was distraught and absolutely furious.  I literally screamed when I heard the news.  And when I learned a few months later that my second first-cousin had been diagnosed as well, my anger and distress were even blacker and deeper.  I couldn’t understand my reaction, and I pushed it down deep, because it was critical to me to be strong for my cousins and able to have my “advocate hat” firmly in place to provide all the possible information, resources, and support I could for them both.  But in talking with my mother one day, I shared with her how deeply furious I was that they were both going through this and how confused I was about feeling this way.   She said that she had the answer, asking “You don’t remember what you said to me, do you?”  Of course, I’m notorious among my family for not remembering anything (thank you, “chemobrain” parts 1 and 2), so we chuckled over that.  She then explained that shortly after my breast cancer diagnosis, she’d asked me why I wasn’t angry about being diagnosed now for a second time.  And she reminded me of my answer: “You said that as awful as it was, you knew you’d get through it, and you weren’t at all angry because, after all, that must mean that you had the family covered.”

Downcast

And that’s true: I continue to pray every day that that’s IT—that cancer has learned now who’s boss and will not DARE touch another of my loved ones.  This may explain why I was so struck by something a fellow cancer survivor and advocate said during a panel discussion last year, where we were both participating as Patient Advocate Fellows during the Drug Information Association (DIA) annual meeting.  When my new friend and colleague, Deborah Cornwall, began her portion of our panel’s presentation, she explained that she was a breast cancer survivor, but that her own “brush with cancer was trivial” compared to the caregiver and patient stories she’d had the honor of hearing while working on her recent book, “Things I Wish I’d Known: Cancer Caregivers Speak Out.”  She explained that although there were so many books for the cancer patient, as there should be, there were very few for the cancer caregivers–for the spouses, the parents, the children, the siblings.  As Deborah discussed her book, its purpose, and the meaning that it had for her and the many caregivers she interviewed, I was deeply moved, thinking about just how important this book was—that in addition to the patients themselves, it’s just as critical that the loved ones who are caring for them receive the support they need and how cancer also turns their worlds upside down.

A few weeks following the conference, Deborah graciously agreed to an interview, during which I asked her about the genesis of her book, any critical overarching themes that arose while speaking with the caregivers, and the experience itself of speaking with so many people about what was often the most heartbreaking time of their lives.  Following is some of the conversation that Deborah and I had, including several quotes from Deborah and the caregivers themselves.

Cancer Caregivers Speak Out

“Why do people love firemen? People love firemen because when everyone else is running out of a burning building, they’re running in.  It’s easier to run away.  Caregivers are running into the burning building…”

~Chuck’s Mother

In the introduction of Deborah’s book, she shares the following, describing the beginning of the caregiver journey:

“Most caregivers describe their reactions to a loved one’s cancer diagnosis in violent terms: a fast-moving or violent physical assault, a punch in the stomach, a car hitting a deep pothole at high speed, a hijacking, an earthquake, a lightning strike, or a vicious animal bite.  A few mentioned a sensation of being frozen and unable to move, or feeling as though a rug had been pulled out from under them.

“If you have been suddenly thrust into the caregiver’s role, you may have experienced similar sensations when a loved one or close friend received the cancer diagnosis.  There’s so much information coming from all directions that you may feel overwhelmed, angry, or bewildered. ‘Normal’ has just disappeared from your life.  You may be fantasizing that you’ll wake up tomorrow and find out that this was all a bad dream.  You may even feel resentful: After all, you didn’t sign up to set your own life aside to become a caregiver.

“Your emotions are real, and confronting them is the first step in coming to grips with your caregiver role.  You’re probably wondering how this unexpected journey will go, and how it will end.  You may be looking for support, guidance, or help—perhaps for the first time in your life—at the same time that you’re uncertain where to look, or even what to ask for.

“That’s another reason why I’ve written this book.”

“In reading about the key issues you’re likely to face and what others did when encountering similar situations, you’ll have the opportunity to learn from their approaches and use them in creating your own solutions to your unique caregiving challenges.  While this book won’t serve as a complete ‘how-to’ guide or steer you to every resource you might need—caregiving often requires invention under pressure—it will provide guidance and build your confidence in inventing your own way.

“I was honored that the people I interviewed chose to share their stories and life lessons.  Their candor and intimacy were unexpected gifts that enriched my life immeasurably and made this book a reality.  In turn, I share their reflections with you in the belief that they will help you on your journey.  Their hard-earned insights, their indomitable hope, and their desire to help others to stay focused in the face of adversity represent their way of giving something back to those who helped them.”

~Deborah Cornwall, Marshfield, Massachusetts, 2012

~~~~~~~~~~~~~

Our interview began with Deborah’s sharing how “Things I Wish I’d Known” came to be:

“Writing a book of some sort actually came from my aunt, who is 95 years old now.  So she was about 91 when the idea came up.  I was talking with her about various experiences that I had had at Hope Lodge, [which provides] free lodging for cancer patients and their caregivers who come in from more than 30 miles away for regular care for cancer treatment…I had been involved on the American Cancer Society Board of Directors in New England when we decided to build the [Hope Lodge in] Boston.  I kind of adopted it personally.  My husband and I would go there periodically to serve holiday meals, because our daughter lives elsewhere and can’t always be with us.  While there, I would always meet people whose stories were just amazing and far more dramatic than my own.  Afterward, I would share them with my elderly aunt on the telephone.  Then one day, she said, “You have got to write a book” … I kind of pooh-poohed it, because your relatives always believe you can do anything.  But a few weeks later, after the idea had had time to germinate,  I realized she was right.”

Hope LodgeIn thinking about the shape that the book would take, Deborah realized that there were few books that specifically focused on the stories of the cancer caregivers, how they coped, what resources were most helpful to them, and, upon reflection, what they wished they had known beforehand but learned only in the midst of their experiences as a caregiver.  So that is the book that she wanted to create.  Deborah noted, “That’s when I charged off on my own and said, ‘Okay, I need to find people who are willing to talk to me.’  She explained that with HIPAA (the Health Insurance Portability and Accountability Act) privacy regulations, “that’s a bit tricky.  So I needed to spread information out in the right places and let people know how to contact me if they were interested in talking about their experiences.”

ConnectionsDeborah stressed that the sourcing of interviewees was itself a fascinating process.  “I think the most interesting piece of it was that in addition to posting invitations at several of the Hope Lodges, I would also send out waves of emails to groups of my own contacts,  asking them to spread the word.  I got a phone call one day from a woman who had received my email, which I’d sent to someone out of state, who forwarded it to somebody else in another state, who in turn forwarded it to the woman who called me.  It turned out that on the third forwarding, it went to [this woman] who lives five minutes from my house!  Isn’t that bizarre?  So there are all sorts of fascinating procurement stories in terms of finding these people.”  Deborah went on to share another example of such serendipitous connections: “I received a phone call from a woman who had just lost her husband.  [She’d been] in a park walking with her daughter and newborn son, and a friend of mine happened to be passing through that city when they met and created the connection.  This woman has sustained our relationship and become a good friend. There were all sorts of really random types of connections, but essentially, when I got to 86—and there was nothing magic in the number–I thought to myself that I’m hearing the same things frequently enough that I believe I have enough to work on.  So that was the genesis.” In the second edition of the book, Deborah added another nine conversations focused on healing, bringing the total to 95.

Deborah emphasized how moved she was that so many caregivers were willing to speak with her for her book.  “I was stunned at how eager people were to talk and how much they wanted to share with me, usually as a complete stranger.  Two-thirds to three-quarters of the caregivers were complete strangers with not even a personal referral connection, not even a mutual friend . It was really stunning to me how eager they were to pour out their most intimate life stories.  And what it said to me once I got going was just how important they thought the book could be.”  She also noted that during their caregiving experiences, “some of these caregivers were deserted by people they thought they were close to.  So I think that in some ways, that made them want to talk about it more, because family members or friends didn’t know what to say and didn’t know how to have a conversation about what the caregivers were going through.  In a way, to talk to a stranger who really wanted to know what happened was nourishing to them.  After one particularly moving conversation, one interviewee said he felt better because it felt as though he’d just been to therapy.  It had presented the opportunity to voice things that he’d kept inside since his wife had died. I think that the interviews did allow people to get in touch with how they had really navigated the experience when maybe they really hadn’t had the opportunity to reflect on it before.”

In fact, folks were so open to speaking with Deborah about their caregiving experiences that her first interview for the book occurred even before she thought she was prepared.  “My first interview was with a woman I’d known for years who was on the staff of the American Cancer Society.  Just before a scheduled meeting started, I [mentioned] to her that I was writing a book on caregivers. Her immediate response was, ‘Oh, I’m a caregiver.  Talk with me!  I have time right after the meeting is over.’   My first thought was, ‘So soon? I haven’t even finished the interview guide yet!,’ but I did it.  Her story was a rich one. She had been the primary caregiver for her father, who was dying of cancer, and at the same time for her mother, who was having a nervous breakdown. My friend was a single mother of two young children, she had two siblings who were uninvolved, and she was trying to work at the same time.  At one point, I asked her, ‘Where were your siblings?  Did they ever ask how you were doing during this whole process?’  It took her several minutes to respond. Then she looked at me with these wide deer-in-the-headlight eyes, and all of a sudden, tears started rolling down her face.  That’s when I realized that I was on to something really important.”

Deborah shared that when she completed and submitted the initial draft to her professional editor, his feedback was positive, yet she was taken aback when he stressed that, ‘It’s only twice as long as it can afford to be to get read.’  She stressed that pruning down the stories she shared was an extremely emotional process for her, because “I feel like I still carry their stories with me all the time.  They shared so much of themselves that I really felt that I owed them to tell their stories.”

Overarching Themes Expressed by Caregivers

When I asked Deborah whether any themes emerged when speaking with family caregivers, she noted that there were several:

“Yes, the first was control, a theme that really permeated every conversation:  the feeling of loss of control.  As you grow up, you develop a profession, you buy a house, you get married, and somehow you start believing that you actually have some control over your life.  Then, all of a sudden, when you’re told that you or a loved one has cancer, that sense of control is gone.  That theme was particularly significant for some of the male caregivers.  I had a couple of them who described themselves as control freaks who had to learn to let go of the fiction that they had any control.

“The second theme was the need to somehow preserve hope and, even for those who were told that they were in very dire straits, to see their situation in a more positive light.  When one was told that x percentage of people only survive a certain period of time, she and her husband said, ‘Fine:  we’ll be in the other percent.’  Even if it was a mind game, these caregivers found some way to create some hope in the situation, but also to make sure that today was a joyful day, that there was something today that I could do to help the person not just get through the day, but really enjoy the day.  And for many of them, that was hard.  But you know, there were several stories of people dying at home, where even the death experience was turned into something that would feel positive and in their control, as opposed to being in a hospital, where you couldn’t control who was coming in and giving you shots and doing all sorts of things.

“The third theme was isolation–the feeling that so many of the caregivers had of being cut off from the people they used to see often. I called those people ‘pull-aways,’ the friends who didn’t know what to say or do, and so didn’t talk about it or didn’t make contact as they might have back before the cancer diagnosis.  And there were some situations where the patient was too sick to go out, and so the caregiver’s solution for overcoming isolation was to invite friends in, but to be very clear about when it was time for them to go.  The caregiving experience changed caregivers’ social patterns, but they really felt its absence unless they invented new ways to interact with friends.

“[Another important] piece was normalcy.  People wanted so badly to get back to normal, and yet there was never going to be a normal again. Maybe a new normal would evolve, but life would never go back to the pre-cancer world.”

Deborah also noted that when reflecting on their experiences as caregivers, “All noted that their caregiving had enriched their lives.  It really did.  And I was really surprised when I asked them, ‘How are you different?’ I just didn’t know what I was going to hear.  It was encouraging and also really striking how many of them engaged in an activity that will in some way give meaning to their caregiving experience, particularly if their loved one died.  Even though this matched my own experience, I didn’t realize just how widespread that giving-back phenomenon would be.  Sometimes it’s focused on a specific type of cancer, such as leukemia or lymphoma.  Sometimes people actually created a new foundation, like two caregiving families living next door to one another who together created a brain tumor organization to benefit a local hospital, for example.  It’s fascinating to hear the creativity people use in determining how to get involved and how they want their loved one either to be honored or remembered.”

I asked Deborah if hearing such emotionally trying, heartfelt stories was ever difficult for her both as an interviewer and as a cancer survivor herself.  She agreed that it was:  “A couple of times, I did break up on the phone, and I apologized.  But I found it didn’t matter to the interviewee.  In fact, it revealed that I cared.  I always felt self-conscious about it, but it turned out to be okay.  To have them talking about the last minutes of somebody’s life and to be able to do so in such a loving and really clear descriptive way, it was hard to imagine putting myself in their shoes and being able to have gone through what they experienced with as much grace.  They really all gave a tremendous gift to me and to anyone who reads the book, because of the raw emotions that they shared.  Equally riveting were their descriptions of their lives afterwards and how they have healed.  I’ve actually written an article about healing and added some of these insights into the second edition of the book, because I think it’s really helpful to those who are still going through the process.”

Starting the Healing Before the Caregiving is Over 

“One of the important things I learned was that people who do it well start the healing process before the caregiving is over,” Deborah stressed.  “And in fact, in some cases, the patient actually helps start that process.  One young man whose mother died described one of her last days, [when she gave] him instructions about how she wanted to be buried.  She asked him to make sure that she was wearing nothing but her full-length mink coat and red high heels!  And that’s what he did.  He can still laugh now when he talks about it, because it was such a funny funny request and reflected so much about her personality.  The other thing she had done that was so fascinating: as an experienced oncology nurse, she surrounded him with many of her nurse friends, so that if he ever had any questions as she was going through treatment, he had this network that could be a safety net for him.  There were several examples of patients who had done something like that.  It turned out to be really important to each caregiver’s healing later.”

The Keys

I couldn’t let Deborah go without asking her about the cover design for her book.  As shown below, the cover displays three large, antique keys that immediately grab the eye.  She explained that “I’d looked at several alternatives, [but] this was the one that struck me.  I think that the keys have meaning in the sense that … it’s almost like there are trap doors throughout the caregiving process.  And knowing what door to open and which key to use, it was almost an analogy of finding answers–‘What’s behind this door? What’s behind that door?’ There are hidden things that you need to find out behind each door.  The key design was really the message of the book and the best way to show it.  Somehow it spoke to me.”

Things I Wish I Knew

Messages from the Caregivers

What better way to conclude than sharing the words of some of the caregivers from “Things I Wish I’d Known: Cancer Caregivers Speak Out”?

“Professional caregivers don’t experience the emotional ups and downs that a family caregiver does.  The family caregiver truly bears the brunt to support the patient in the right ways, not too much or too little.  It’s critical for the patient’s progress.”

~Ellen M, registered nurse and cancer survivor, sharing her perspective on the role of her husband as  caregiver

“Caregivers have a difficult emotional time.  They don’t face the daily adrenaline surge that the patient does, but they have to pick up the pieces when things aren’t going well.  It’s hard for them to know when to reach in and when not to.  They walk a tightrope between letting the patient be in control and being able to take care of them without letting their loved one feel incapacitated.  Caregivers haven’t experienced the physical pain, but they also can’t make it go away.  The caregiver has to be strong, but not overpowering; sympathetic and optimistic, but not saccharine; realistic but not discouraging; upbeat but not inappropriately happy.”

~ Bobbi, long-time breast cancer survivor, articulating the challenge of caregiving

“There’s no better way to learn about dealing with cancer as a caregiver than hearing other people’s stories.”

~ Debbie B’s husband

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The Book

Interested readers can locate Deborah’s book in paperback or electronic forms at the following websites:

“Things I Wish I’d Known: Cancer Caregivers Speak Out”

Amazon.com

Barnes & Noble