The Problem with “How Tos”

While scrolling through MSN’s online page, I stumbled on the catchy headline: “7 Tips to Decrease Cancer Risk and Prevent Recurrence.”  The article says “cancer survivors can help cancer-proof their bodies by managing their weight in the healthiest way possible. The same way of eating that will help you lose weight in a healthy manner is the same way of eating that will help you improve your immune function and promote anti-cancer activity in your body.”  Sounds simple.  

Of the seven useful tips, my favorites include eating a plant-based diet; exercising (i.e. parking away from a store, walking down longer store aisles, etc.); sleeping better (but only when it's dark and not before feeling tired???); and integrating mindfulness (e.g. less stress).  So, if I’m reading correctly, all the lazy, close-parking, short-aisle walking, daytime napping, ADHD types have a higher risk of cancer. 

Before I dive into what may come off as a snarky commentary on what is ultimately, helpful advice, let me say that the correlations between obesity and cancer are convincing, as are the studies promoting anti-oxidants and leafy greens as strong cancer fighting agents.  By eating a balanced diet and exercising, one can improve immune function which can help stave off cancer.  Mom and Craig were strong advocates of eating well, and following nutritional guidelines to maximize their chances for overcoming cancer.  That being said, following simple tips is easier said than done, and in the end, may not change the outcome. 

The problem with “How Tos” is that they imply that if people would simply eat more blueberries, park farther away from the grocery store, avoid alcohol, or be more patient, they too could avoid cancer.  But what happens when a healthy diet isn’t enough?  What after ingesting anti-oxidants and flax seed oil, walking ten flights of stairs, and slowing life down, we still “catch” cancer?  After all, Craig was extremely healthy.  He worked out religiously, avoided butter and trans-fats, ate veggies and whole proteins, and he still “caught” cancer.  For Mom, no amount of blueberry shakes and long walks down Skyline prevented her tumor from recurring.  And if the "Seven Tips" were true and healthy living was the golden cup, how do we explain Keith Richards, Nick Nolte, and the other seven-tip rebels?  What gives? 

The challenge with “How Tos” is not that they are misleading in their advice; it’s simply that cancer is far more complicated than what seven tips can adequately capture.  For decades, cancer has stumped some of the best scientists across the globe.  The first chemo agent was developed in the 1940s.  In 1971, Richard Nixon declared a war on cancer with the National Cancer Act.  Since then, countless federal task forces, foundations, non-governmental organizations, private businesses and academia have teamed to find a cure.  Billions of dollars later, the war against cancer continues, with “Stand Up To Cancer” being the latest initiative to join the cause.  To be sure, we’ve made great strides in cancer treatment and research.  From 1975 to 2005, death rates from breast cancer and colorectal cancer fell from 31 to 24 and 28 to 17 per 100,000 people, respectively.   This is largely due to better screening and advancements in chemotherapy treatments.  Exciting new treatments like angiogenesis inhibitors (e.g. Avastin), epidermal growth factor receptor (EGFR) inhibitors (e.g. Tarceva) and others have also emerged on the market, making some cancers easier to treat.    

Yet, despite advances in cancer treatment, progress has been wildly uneven. According to Newsweek’s “We Fought Cancer…And Cancer Won,” the death rates for other cancers, including lung, pancreatic, liver, and melanoma, have increased.  Cancer is on track to kill over 500,000 people this year.  The difficulty in finding a cure has not been from a lack of trying.  Cancer cells create multiple pathways for growth.  While innovations targeting one pathway may help slow cancer, it’s typically only a matter of time until cancer cells discover alternative pathways to proliferation.  As the article explains:

"Most cells use the VEGF pathway [that Avastin blocks], but there are at least 12 other pathways, and Avastin doesn't block any of them. With VEGF out of commission, malignant cells turn to these alternatives...[With] Tarceva, given to lung-cancer patients, which turns off a molecule called EGFR that fuels the proliferation of some lung and other cancer cells...Even if a tiny fraction of malignant cells in the tumor or at metastatic sites use a proliferation pathway other than EGFR, they proliferate unchecked; most patients are dead within three years." 

Though we have made great strides in understanding and treating some cancers, and improving the quality of life for cancer patients, other cancer remain stuck.  We’ve only begun to scratch the surface of the biological and molecular complexity of the 100 types of cancers identified so far.  Where science remains stuck, patients have few options and death is almost a certainty.  The article suggests that to overcome cancer, oncologists must target all the various cancers that comprise cancer, or the dozens of different pathways that cells use to proliferate and spread.  Determining how a particular patient's tumor works and treating the growth, replication, and angiogenesis pathways with multiple drugs may lead to better outcomes.

But transferring breakthroughs in scientific research into breakthroughs in therapies is another step altogether.  In the cross-sections of funding, interest, and risk are cancer studies – some are provocative and may lead to major breakthroughs, others are slogging away at tricky problems, building on past research to improve current treatments and standards of care.  All have the possibility of making a difference and advancing what we know about cancer(s).  The problem is the time it takes transferring scientific studies from the thought to the laboratory to the pharmacy.  FDA approval is long and costly.  The article states that whereas 20 percent of compounds for other diseases acquire FDA approval, for cancer, only 8 percent are of compounds are approved.  The possibility of wealth generated from patent rights provides disincentives for market competition.  There is less incentive to invest research time and money in largely unprofitable areas or in obscure cancers with little chance for fame and glory.  Insurance companies generally accept only approved treatments, so if science lags behind, so too does the health coverage. 

With that said, breakthroughs in one area tend to affect cancer treatments as a whole.  And with every study, we move closer to understanding cancer’s complexity and how to better treat the varieties of mutations.  The last thirty five years fighting cancer has proven that more research is needed to not only develop cures, but to discover preventative techniques that ultimately decrease the likelihood of cancer.  To the extent that an anti-oxidant rich diet, daily exercise, and a stress-free life help stave off inflammatory or other processes that may contribute to cell mutations, tips such as MSN’s Seven How Tos are useful. 

But what Newsweek’s piece “We Fought Cancer…And Cancer Won” reminds us is that, for some, cancer is a crapshoot.  Our culture likes to emphasize the success stories, the Lance Armstrong’s of the world who battle back testicular cancer only to win seven Tour de Frances, and the advances in technology that may someday lead to a cure.  These stories must be told.  But equally as important are the thousands of stories where there are no cures, where technology lags behind, and where despite everything, cancer wins.  Craig’s kidney cancer emerged from the depths of nowhere.  While in hindsight, he could have had more blueberries while growing up, my gut tells me that he probably would have developed cancer anyway.  As for Mom, scientists have only now discovered cell mutations and pathways that may contribute to the cancer's growth.  Something tells me, her diet was only a part of the puzzle.  We’re just beginning to understand why cancers develop, and how they grow.  I suspect that, in time, we will have a new way of viewing cancer, and perhaps a new term altogether – one that accounts for each cancer's complexity.    

I realize that the tone may sound defeatist.  To the contrary.  I am advocate for taking proactive steps to decrease cancer risk.  But, there’s a careful balance between emphasizing the tools that are available to promote a healthy immune system and implicitly blaming the victim for not doing enough.  When will our “yes we can” culture be okay with acknowledging that sometimes “no we can’t…at least not yet.”  Not all cancers are the same and not all are winnable.  Cancer is a combination of environment, diet, biology and genes, or in other words, bad luck.  We’ve made a lot of progress with a handful of cancers, but there are still cancers that remain terribly hard to treat.  One can do everything possible to avoid it, but often, there’s little one can do.  That's where we are, but with hope, more advances are on the horizon.     -- J

5 Months

Today is also the 5 month anniversary of our beautiful mom's passing. Five months ago, we buzzed her hair and held her hand as she passed away in our arms, bathed in love.

During these difficult days--Craig's birthday, our mom's 5 month anniversary, Craig's two month anniversary tomorrow, our first Thanksgiving as a family of 4 (2 in spirit)--I can safely say that, now more than ever, we need to feel the embrace of those around of us...

~E

To Craig on Your 33rd Birthday

Happy Birthday Craig!

The sun shines bright over the Oklahoma straw grass.  It's a beautiful day, and the temperature is ripe for a run around the cross country track. I can still see you whizzing by with a goofy look, your swishy pants nearly catching fire with every stride.

The loss is too big for words. I miss you and love you, and wish you could be here to celebrate your 33rd. We have a cake for you, and will toast in your name...

I miss you Craigie...with every part of me. ~E

When 'cool' things happen, I think of them

Batman

 

After standing outside for what seemed like a half an hour and holding off our position in the front of the line, we eagerly handed our tickets to the usher and scurried towards the theater for Batman showing in one of Denver’s Downtown movie theaters. First through the doors, we quickly staked our claim, parking Craig in one of the theater’s few wheelchair viewing spaces. This was the first movie-going experience where Craig needed reinforcements and it came in the form of Mom’s wheelchair. But, the viewing angle from such a short distance to the larger than life screen was too extreme for Craig; he needed to move back (as would anybody!). We helped Craig to a seat a few rows from the main aisle, where the majority of people who had a TRUE opportunity to CHOOSE a seat would sit. (Folks in wheelchairs might well come away with hearing and vision problems after sitting so close to the screen. Sheesh.)

 

As I watched Batman, I couldn’t help but think of Mom and how much she likely anticipated seeing this blockbuster of a movie, and would have been there in the row with us had she the opportunity. I could see her staring at the screen, completely locked into the movie--the images bouncing off of her glasses. A few more weeks and that would have been so.

 

Rome

 

Jill inserted disc one of the Rome series into Craig’s DVD player as others gathered their respective laptops and caffeinated beverages before finding their seats. Craig waited patiently in his hospital bed; his RT-D2 supplemental oxygen tank hovered just over his right shoulder, giving him extra oxygen to aid his increasingly labored breathing. I remember being skeptical of the series as characters were introduced and sex scenes streamed along as common as floats in a Macy’s day parade.

 

As the days passed and Disc 1 was replaced by Disc 3 and Disc 4, we were hooked not for the glorious content of Rome, though it was rather entertaining, but because it made Craig happy. It had become something he looked forward to with each new day. Tired as he was, he would always find the strength to stay awake through an episode, sometimes two.

 

One night, I vividly recall it taking him every ounce of energy and determination to utter the whispered words, “Are we going to watch Rome?”  His eyes were wide, excited, focused; his eyebrows curved upward with a hint of concern over the effort it took just to speak. Every word took concerted effort. I remember just how he looked, just how he sounded—the last word said in crescendo in as much a question as it was a plea. This was the last night we watched Rome together.

 

A few weeks later, after we brought back Craig’s belongings, Dad, Diane, Jill and I watched the final episode of Rome, and I couldn’t help but think of Craig and how much he would have enjoyed seeing the grand finale. A few more weeks and that would have been so.

 

Obamarama

 

Jill and I stood on a grassy Virginia hill among thousands of energized Obama rally-goers. We danced to cheesy music, and rolled our eyes to sleepy Casio music from what could only be Kenny G/Earth, Wind, Fire karaoke winners as we awaited Obama's arrival and subsequent speech. The air was crisp and thick with the feeling of witnessing history. “Heyyyyy!”  Somehow, through the sea of faces, Steve managed to not only find us but sneak up on us. We stood together with Craig’s best friend, listening to Obama’s speech, each of us wishing Craig could be there with us.

 

Craig was active in the Obama campaign before he fell ill and would have been a delegate for the DNC. He would have loved hearing about the rally—Mom, too. We would have surely captured the moment through speaker phone. And, as history was made the next day, we would have surely conference called each other in elation of witnessing history. A few more weeks, a few more months, this would have been so.

 

From the everyday occurrence to celebrated marks in American history, not a day passes where I don’t think of them and wish so desperately that I had them here to share in the moment.

 

It's during these "cool" or "neat" moments, when I miss them the most … -- E

Balancing the Bad Days

On the bad days, the emotional ups and downs can be intense – even brutal -- and it's hard predicting the triggers.  Sometimes, it can be a particular kind of perfume, or a song, or like last night, a simple conversation with a person who knew Craig while at OSU.  Whatever the case, the feeling of loss is profound and impressive.  And it's in these moments that I wish I could simply call my brother or mom.  To know that's now an eternal impossibility is hard to grasp or come to terms with.  Some liken this kind of loss as a breakup on steroids.  But, with a breakup, there's always the possibility of future memories.  This kind of breakup lasts, lasts, and then lasts some more.  Earlier this evening, I had to stop myself from asking Diane if she had spoken with Craig.  Old habits are hard to break, I suppose. 

On the bad days, I’m not sure what living my own life consists of; it's been a while.  I feel a bit wayward with no fixed roots.  Though it'd be nice to settle here, I can't help but feel that settling would be...settling. At the same time, I feel isolated and lost.  My sense of being, time, and permanence has been upended.  What was once a firm understanding of “what is” has morphed into a jumbled mess of “not sures” or metaphysical chaos.  My knowledge of life now includes a family of four.  Happiness requires a new level of abstraction.  The future consists of confusing cross-roads of options and alternatives – a smorgasbord of indecision. 

On the bad days, I feel like I’m on shaky terrain, as if my continental shelf is narrow, with family and friends forming a thin rocky bottom on which to stand.  But then the ground drops.

As they say, the bad days too shall pass -- and they do.  It stinks to be in the gutter, but, thankfully, it’s not a permanent state of being.  There’s always tomorrow… --J    

Figuring it out

It’s been a while since I last wrote. I’d like to say the drought is because we’ve been traveling, but really, I’ve lost my words. Some days I feel like sharing, on others, I’m at a loss for what to say, not because life is boring, but rather, because there’s too much swirling in my head. My brain is a jumbled mess of confusing crossroads, steep hills, and quiet valleys. Since Craig’s death, our lives have been on the move. In some respects, my life is still unsettled. While I was in Denver, my contract with UNDP ended, so now, after fourteen months of involuntary change, I have the unique opportunity of voluntarily changing everything -- life, career, and location. The world is my oyster, so to speak. So where do I go? Washington, D.C.

Yes, I’m typing from Erin’s apartment while she works across the street. Her commute is horrendous, by all standards. Sometimes, the two walk signs she has to navigate en route to her office (located across the street) can last a few minutes each, dragging her walking time to over five minutes. Thankfully, there’s a coffee shop on the corner, just in the event she gets thirsty between cross-walks. Why she doesn’t move across the street and shave a few minutes off her commute is beyond me. It’s a tossup on the longest commute: Erin with her two crosswalks, or Craig with his one-block walk. I feel like an old grandmother with my sad tales of having to wait hours for a crowded bus to take me to work, or walking 45 minutes in the Bangkok heat and pollution to my apartment because it was a faster mode of transportation. Ah, kids these days; they’re so spoiled.

Needless to say, we’re in DC. Erin and I arrived a little over two weeks ago after spending a night in Indianapolis with Greg and Jodi (thanks for putting us up!). The drive from Stillwater was mostly uneventful, except for one episode of kitty cat "emotional toileting", which required us to stop off in Terra Haute to clean Sammie’s cage. (Think exorcist projectile vomiting, but of another variety.) We arrived in D.C. around 9 p.m. Sunday evening, which was also Craig’s one month anniversary. After taking a few moments to unpack the cats and our things, Erin and I paused to toast a glass to Craig, and to ourselves. We’ve had a rough road of it, and though it may be a tad presumptuous to say that the worst is behind us, we felt content saying just that (apart from the grieving that lies ahead). It’s times like these that I look back to New Years and think to myself, maybe I should have included a year of no illness in my New Year’s resolution. But, though there are no guarantees in life, I feel confidant and saying that the next year will different – and deservingly so.

After honoring Craig’s anniversary, Erin and I began considering where we are and what we need to do as individuals, colleagues, sisters, friends and daughters to begin the path of healing. We decided that keeping busy helps. So far, we’ve toured DC, visited a patch of natural falls just outside Silver Spring, gone to football watch parties, rock climbed, and joined “meet up” groups. We’ve seen Obama speak, and Sarah Jessica Parker 'direct' (she’s filming a pilot for a spin-off to Sex and the City in Adams Morgan). We’ve seen a shoplifter sprint for his life with a security officer close on his heels. I’ve witnessed a bus driver get into two long-winded altercations, complete with name calling and “nooo, you are!” comebacks, with his passengers. (The police had to escort one passenger from the bus, though, honestly, they should have escorted the bus driver. Perhaps bus driving isn’t the best line of work for a hot head prone to schoolyard fights.)

More importantly, I’ve been interviewing. Though I’m still keeping my options open for working abroad, I’m also considering working in the DC area for a change. Interviewing at this point in my life is a little unnerving; I don’t feel at my best. Whereas others have continued on in their field, I’ve been out of the loop, so to speak, for the past year or so. Though I’m confident in my knowledge and understanding, I still feel uncomfortable in my own skin, which is something I’ll have to get used to. Moving back to the States will also be difficult. I haven’t lived State-side since 2002. My friends, job, and life are in Bangkok. To have to say goodbye to familiarity amidst so much loss, and start anew is frightening. It’s also oddly liberating. I have an opportunity to set my own path, to change the aspects in my life that needed changing. There are so few opportunities for such transformative change.

Plunging back into the work is not the only thing that will take getting used to. Being with people is also difficult. My first instinct is to tell the world what just happened, but not everyone is interested, which is hard. To be forgotten is one thing, but to be ignored is another. People listen with only half an ear, and are eager to move onto a more uplifting topic than cancer. I don’t blame them. No one likes a Debbie Downer, or so we’re told. Our culture applauds the eternally optimistic and super fun loving, yet, with a whisper and a sigh, turns its back on sadness and grief. It’s an interesting phenomenon, and one that I can understand. I like to think it’s because people feel uncomfortable and don’t know if by talking about it, they would be intruding on another’s grief, or perhaps feed the sadness by bringing up “bad memories.” Grief is a minefield and it’s hard to know what to do. But, it’s my experience that something is better than nothing.

Despite all the uncertainty, it feels good to be doing something, to feel like I’m moving forward. I’m still learning about myself, and about what I need as I continue to come to terms with losing Mom and Craig. The next few months and years will no doubt be our hardest. There will be days where life seems to click, and others where it seems to be falling apart. Finding a balance will be the hard part. Yet, by joining groups and engaging in activities, I feel like I’m laying the groundwork for better days to come. I know I won’t be walking this path alone. –J

The Denver Sign-off

To leave Denver was to leave a part of Craig and our lives, but to enter his city without him there waiting for us simply stole my heart. Jill, Diane and I drove into Denver one Wednesday night after having Craig's Oklahoma memorial service a few days before. Though nothing had changed, Denver's skyline looked and felt different knowing he was gone. Each time before--in April then again in July--I'd take the 225 exit towards Aurora, heading straight for the hospital and to Craig no matter what hour I'd roll in. As I drove by the exit, I longed for those University of Colorado days despite the anguish they'd bring knowing Craig had been admitted again. At least he was still alive.

 

That Wednesday, we drove towards his apartment as we did time and again. As we drove to his building, I was struck by memories of how he used to meet us "on the corner" as we parked across the streeet.  I can vividly remember him standing on the corner of his apartment complex ready to receive us. In his winter coat or casual button down, he’d flip his hand in a wave before walking across the intersection in our direction using Denver’s trademark diagonal crosswalk. Always receptive, always a graceful host, he was eager to bring his sisters to his apartment and begin the adventures.

 

Walking into his apartment after his Oklahoma funeral was surreal. We turned the key and opened the door to find the same smell--ever potent, ever vanilla, ever Craig. His apartment was a distinct fragrance and one I’m sure Emily and the sisters would gladly bottle up if we could. It was as if we had walked into his apartment before darting off for snow-shoeing or a dinner on the mall. It was as if he would come from his bedroom to ask if he looked okay or to talk of work. It was as if he was still there, with us, a part of us. To reconcile all the familiar sights, sounds and smells against the deep crevasse of his loss was all but impossible. His belongings remained just as he left them. You could sense his interests from his keepsakes: a refrigerator with a picture of Diane acting ridiculous and the four of us decked out in faux gang clothing acting even more ridiculous. His bookshelves were lined with obscure novels, and items from his obscure travels. Highlighted with the most prominence were photos of his family—you couldn’t separate Craig from his family much like you can’t pull the earth from gravity. It showed. It was with us as we entered his apartment-- his door still peppered with images of familyfor him to gaze upon as he entered his dying days.

 

We stayed in his room after his passing. It somehow brought us closer to him, as did going through his belongings. To make sense of them was much too difficult a process so close to his death; we simply boxed up what we could. To pack up your brother...It’s as an impossible a task as any. It felt wrong to invade his private life, a man of 32, yet there we were trying to make sense of it. I remember gazing upon his hand-writing and falling apart. A man of 32. He was much too young, much too vibrant, much too provocative to have his sisters organize him into tidy little boxes. It just doesn’t make sense.

 

Yet, we packed him up and donated his medical supplies to Project Cure. Before long we were gazing from his empty apartment, staring at the intersections we came to memorize after years of visiting, saying goodbye to the University of Colorado that we had identified and separated from the Denver skyline. His apartment still pleasantly smelled of Craig despite appearing as an empty box. Maybe that was symbolic. His memory resides inside. ~E

Blind Spot

Thoughts Across the Calendar

September

A faint smell of pinon floats on the brisk night air as I walk the few steps from my car to Emily's basement. It's September and the air smells of "football" (Oklahoma State football). Mom would know what that means. It's a feeling that lingers in my throat somewhere between my heart and head as I avoid the dew-kissed grass and aim for the stone steps marking the path to Emily's gate. It's late; Craig needs me, I need Craig, but I still have cat duty.

A lot has changed since mid-April when I began my semi-permanent residency in Denver. Seasons have changed. In April, I packed my suitcase with spring-time clothes with a few sweaters to cut the chill.  Now, i find myself deep into September. Halloween decorations fill the racks at stores and baseball decals have been replaced with football banners and Denver Broncos merchandise. Mom has been gone for 3 months and Craig seems to be nearing his end...

October

It's October. For months, we could have worn a rut between three directions: first, from the hospital to Craig's and, then, from Craig's to Emily's. These routes became as common as the lines on my hand and now there's little point for the desperate go-between save that from the need to "do the cats" and "clean Craig's apartment". The hospital was cut from the sequence long ago and now the other half of the journey has ended. Our Mom's and Craig's journeys have ended and the role of caretaker is no longer there. That frenetic 14-month pace is over and it's awkward making the drive between Craig and Emily's without "panic and anxiety" as carpoolers. They are still there in a sense, just dressed in evening wear with the expectation of recognition.

But the days pass, and when the reminders pull on the hem, I tend to look down and shake them off more than pay them any recognition. Diane said it best when she noted that to directly look at what we've been through-the loss of our mom and Craig-is like looking at the sun. You can't look at it directly lest you burn your eyes and reap painful damage (adding an artful spin). It seems that way. To take on this loss is too much at once, like eating an elephant in one sitting.

It's not like I won't "look" though. I try; it's just a blind spot--a total eclipse of the sun leaving only a sliver of what waits behind. Those slivers appear in the spontaneous moments of boredom followed by the "hey, I'll call Mom or Craig" moments, and the jarring sadness of not being able to. Or, seeing Craig's sweat stained Michigan hat I'd put on from time to time before handing it to him. Those are the slivers, the rim. The void in the middle is what awaits recognition.~E

Decisions Part I: The virtues of quitting

"Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful people with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan ‘press on' has solved and always will solve the problems of the human race."

-- Calvin Coolidge

The notion that persistence is essential for success and happiness is deeply embedded in our culture. America's founding philosophy is with steadfast determination and unrelenting pursuit, people can overcome all obstacles. We're constantly reminded by Nike commercials, Wall Street, Michael Phelps and Warren Buffett that "perseverance pays off" and "quitters never win, and winners never quit." So profound is the notion of "pressing on" that people would rather endure failing careers, loveless marriages, and hostile work environments than quit. To quit is to give up, to throw in the towel, to give in to failure. After all, no one wants to be perceived as a quitter -- a loser who couldn't hack it when the "going got tough."

To be sure, studies show that persistence in pursuing a life goal can bring about positive long-term effects. Pressing on in times of difficulty can increase motivation, and lead to greater self-confidence, less stress, and overall well-being. On the other hand, "giving up" on attainable goals can lead to depression and low self-worth. But what about situations in which goals are clearly unattainable? Could "pressing on" actually lead to poorer health? What if, by shifting goals, quitters could actually win, and in the process, secure peace of mind?

Research suggests that when people are faced with situations in which they cannot realize a key life goal, the most adaptive response may be to disengage from that goal. In fact, a recent study by Gregory Miller shows that those who could not renounce unattainable goals showed increase levels of the inflammatory molecule C-reactive protein, which is linked to heart disease, diabetes, and early aging. Those who could disengage or shift from unattainable goals towards more manageable goals were able to create a different sense of accomplishment and well-being, and reported better health. Shifting goals to more manageable ones is easier if one already has other alternatives available.

Understanding cultural, physiological and psychological effects of quitting is useful when considering the psychological aspects that underlie the decision to pursue cancer treatment. The NYT's article "In Cancer Therapy, There is a time to Treat and a Time to Let Go" described a study on ovarian cancer where "patients with a shorter survival time...had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival." Their findings suggested that "in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life [were] not associated with a survival benefit." Further, though it's been shown that patients who choose hospice over aggressive treatment often live longer and with less discomfort, "with aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice."

The decision to terminate anti-cancer treatments is perhaps one of the hardest and most personal decisions a person with cancer has to make. There is no 'right' answer; each person's situation is different, as is each person's will to live. Ultimately, the best decision is whatever feels right at the time. But when the cancer is advancing despite all efforts, there are confounding psychological and cultural pressures that can make the decision to disengage from treatment more difficult.

Strong is the belief that we have to "do something" when faced with cancer. Internally, we believe that we must seek treatment until the end, to press on in the face of adversity. To relinquish treatment is to "give up" and for some, to hasten death. Treatment is seen as a lifeline, as something tangible to hold on to. To end treatment is to be cut off from care, from the doctors and social networks that were an integral part of fighting cancer. Craig said that discontinuing treatment was like flying solo, or jumping out of an airplane without a chute. Craig would rather continue seeking treatment even if only for the peace of mind that he wouldn't be abandoned by his doctors, or by science. For some, staying the course is also perceived as "staying strong." Many want to be remembered for having tried every treatment possible, and for not giving up hope for a cure. To press on is to prove their commitment to not only themselves but to those that have supported them.

It's not always the patient who is reluctant to disengage from anti-cancer treatment. Staying the course is often reinforced by doctors, medical staff, family and friends. Subtle reminders to "keep fighting," "stay strong" and "never give up" urge cancer patients to keep pursuing every available treatment, even when the treatment may do more harm than good. People may just as soon stop treatment in order to have peace and relief at the end of life. Indeed, there can be a great sense of relief from not having to fight. The decision to stop can be overwhelmed by a deep sense of cowardice, failure, or guilt for "giving up" when others were "believing" and "staying strong."

Given our culture's pension for winning, saying "no" to cancer treatment can be emotionally painful. The social pressure to "never give up" can muddy personal decisions in the face of cancer. The problem lies not only in the social pressure to keep trying, but in the way alternative goals are framed. There is plenty of literature supporting people's fight against cancer, and even information on when to terminate treatment (i.e. when the costs of treatment outweigh the benefits). But there isn't much available with regards to helping people through the decision of letting go, of deciding to shift from one goal to another.

Decisions can be much harder when alternatives seem so bleak. But there are alternatives. Rather than couching termination of treatment as being an end to one's cancer process, perhaps the verbiage should describe the change as shifting ones goals to more attainable outcomes, like improving quality of life. As studies show, withdrawal from an unattainable goal (e.g. curing terminal cancer) may enable people to recoup personal resources that can be used to reengage in new goals. Focusing on improving ones quality of life during the end stages of cancer is a legitimate goal. Indeed, living a quality life is an alternative. And in this sense, hospice could be couched as an attainable treatment, offering peace of mind during the end stages of lie, where the focus is not on winning, but on comfort, and honoring a patient's wishes, respecting the process, and valuing life as it happens.

This isn't to say that Mom and Craig were somehow forced into the decisions they made. Rather, this post seeks to address both the internal struggle, as well as the social pressures of "never giving up," which can make deciding difficult. Ultimately, I will never know what was really in play for Mom and Craig, nor will I know their struggles. But, I hope that rephrasing alternatives could somehow help to reduce the emotional difficulties of choosing end of life options. --J

Watch for the next installment on Decisions: Treatment as a Personal Choice