Category: cancer management

STAGE 4 CANCER: RETHINKING OUR SUPPORT SYSTEMS

Post author By sarambarton
Post date February 21, 2019

Four years ago, my friend got a frightening taste of death when her breast cancer metastasized, spreading into other organs. Her prognosis was not sunny, but somehow, she managed to endure some grueling treatments and survive them. When some doctors suggested that she prepare for the worst, she pushed back. She still had so many things to accomplish and she wasn’t ready to give up the fight.

When I look at where she is today, I am amazed. Her cancer has been in check now for quite some time, although she requires regular chemotherapy treatments to stay that way. But the important thing is that she is still here. Why? She is caregiver for her elderly parents, who have had serious challenges over the last year or so. If she weren’t here, what would have happened to them? Who would have looked after them in their time of need?

But her goals, her raison d’être, are far more ambitious than that. She is not just a caring and compassionate daughter. She also has guided young lawyers toward success, enabling them to pass the California bar. When her doctors informed her that it was time to retire, she balked, insisting on keeping her career intact, even as she scaled back her workload. It seemed like every time she was on the brink of success, cancer knocked her back on her fanny.

One of the early casualties of this unpleasant reality was her music. If you cannot hold your instrument, it’s hard to be a musician. Neuropathy, muscle weakness, mobility issues, and mind-numbing pain all took their toll on her. When she recently recorded her version of Santa Baby, we were so thrilled, not just because she stepped up to the microphone, but because she took that song and made it her own. She was getting back into the limelight, where she belongs.

The truth is that my friend doesn’t fit the mold of what has long been held to be the vision of a Stage 4 cancer patient. She has so many struggles, but she also has so many successes.

Stage 4 cancer patients often straddle the divide between life and death. As their disease is managed over years, not months, and as treatments have improved, these survivors are in perpetual limbo. Why does that matter?

It’s hard to keep a job when you have persistent, yet treatable long-term health challenges. If my friend had followed her doctors’ advice four years ago, her income would have been wiped out and she would be completely dependent on disability payments. Her teaching opportunities would have dried up. She would have had little hope of restarting her career.

This is often a typical experience for Stage 4 patients like the banker I met long ago. He bemoaned the fact that he was forced to give up his position in a financial institution because of his disease because he wasn’t expected to survive it. Four years later, with his stomach cancer managed, he floundered, trying to restart his career. He still had much he hoped to accomplish in the world of finance, yet he was on the outside, looking in, all because the expectation was that he was dying.

We need to start the conversation about how we can empower those Stage 4 survivors who choose to remain active and engaged in their chosen fields, should they feel up to working.

Pain management and palliative care are also crucial for any patient with Stage 4 cancer. There are almost always side effects and complications which can dramatically impact a patient’s ability to get over the obstacles that stand in the way between the “new normal” and everyday life. The better the disease management, the greater the success in navigating said obstacles. It’s important that we understand just how powerful it is when we help these patients find the “work-arounds” that hold them back. Overcoming the challenges of immobility and finding physical adaptations are imperative. How do we help people who are sometimes able and sometimes not able? There are times my friend can walk and times she can’t. There are times my friend can drive and times she can’t. She is able-bodied and yet disabled. That’s because she resides now in two different worlds, and she’s never really sure which one of them she’s in until she runs head-first into trouble.

What kind of accommodations should we make for people whose health fluctuates? We can’t just tell these people to surrender to their disease because they bear the label of Stage 4 cancer. We can’t expect them to give up the things that matter most to them. Nor can we dictate to them what they should or should not do. The doctors who insisted that my friend retire didn’t understand just how important her work is to her. For as long as she can remain engaged in her career, focusing on goals and continuing to advance her agenda, she chooses to do this. It helps her to have a purpose in life. It helps her to feel like she’s still a contributor whether she guides students, cares for her parents, or continues to pursue her beloved music. And to be honest, the world genuinely is a better place because she is still with us. So, who are we to stop her from pursuing her dreams? So many lives have been lost through the years, so many good people whose battles asked too much of them. That’s why we often think of my friend as a walking miracle. She has beaten the odds thus far, and she has put that “extra” time on this earth to good use. But she, just like other Stage 4 cancer survivors, needs more than just cheerful words and prayers.

There will come a time when more and more people survive the disease, and when that happens, we will have to help them maneuver back and forth between the world of active disease treatment and remission, without shutting them out of, or off from, what makes life worth living.

Is it a drain on healthcare to have people survive their disease? Yes and no. For every patient who adapts to the challenges, doctors learn more about what works and what doesn’t work. They find what is cost-effective and what wastes valuable time, money, energy, and resources. Some chemotherapy treatments have turned out to cause more damage than good. Some of the newer options that empower the immune system to fight the disease are showing promise. As these survivors begin to move away from a terminal prognosis, they need a better transition to more effective support systems.

How can we provide personal assistance, services, treatments, career options, and insurance coverage that works for them? Obviously, we know that what works for some doesn’t work for others. Can we find new ways to be mindful of their needs and responsive to their ever-changing physicality? Maybe what we really need is for Stage 4 patients to educate us about what they really need. While they are able, we should help them to flourish. And while they are disabled, we should work to empower them in ways that show that we recognize and respect that their lives are in limbo. We should strive to be that “bridge over troubled water” that Simon and Garfunkel sang about so eloquently, not just because we feel sorry for Stage 4 survivors, but because we understand just how valuable their lives really are, and we remain grateful that they are with us still.

Tags cancer management, palliative care, Stage 4 cancer

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Why Keeping Hope Alive Is Critical

Post author By sarambarton
Post date March 9, 2017

These days, with more advances in cancer treatments, survival rates have improved. But there is often a price to pay. Side effects can be brutal. Complications can be devastating.

Cancer attacks more than just the human body. It crushes the human spirit. The most confident person can be devastated by the loss of hope.

Doctors and nurses often treat the cancer patient’s body, but not necessarily the mind. And yet, the mind is one of the greatest tools available in cancer management. How a patient perceives his or her cancer really does matter.

If a patient feels there is nothing to gain from treatment, it’s unlikely that he or she will bother to:

— Take medications appropriately
— Eat as healthy as possible under the circumstances
— Get enough rest
— Avoid unnecessary risks to the immune system

Cancer is stressful. And when that stress builds up and becomes overwhelming, patients often surrender to the sense that it’s futile to even try. It’s easy to throw in the towel when you are in pain and unable to handle all of the horrible side effects. Patients often presume it’s all about the cancer. But sometimes that can be a mistake.

There are so many issues that can crop up in advanced cancer management, when the options are fewer and the regimen is rougher. If a patient is undergoing chemotherapy on an ongoing basis, dehydration, infection, neuropathy, and steroids are just some of the complications that can wreak havoc with the human body. After a while, it’s hard to tell whether it’s the cancer causing the problem or the treatment.

If a patient loses hope and gives up, the battle is over. People who are pessimistic about their chances won’t bother to look for solutions. They won’t tell their oncologists about new symptoms because they don’t want to know their cancer has advanced. But what if it isn’t the cancer?

What if the side effects are manageable with the right diagnosis? What if there are options if the oncologist recognizes what is really causing the problem?

I remember sitting in an oncologist’s office with a loved one who had just been given the prognosis about cancer. How many people survived this kind of cancer? What were the chances she could come out on the winning side of the equation? The doctor’s response was simple. While many people didn’t survive it, there were people who did. Why couldn’t she be one of the people who survived it?

That little sliver of hope at the right moment in time made a difference. She lived much longer than the majority of patients with the same diagnosis. We learned to manage the symptoms, to address them as they came up, to focus on comfort in order to maximize quality of life. Cancer patients need to feel they still have a reason to get up in the morning. They need to believe there is something worth doing. They need to believe they still have a chance to grab the brass ring.

I have been blessed over the last couple of years in unusual ways. I lost two family members to cancers that were aggressive. But as I grieved, a friend of mine beat the odds, and in doing so, she taught me that hope is a critical component of any good cancer management program. After such a struggle with pain and debilitating side effects, she is still here. She teaches me what courage, fortitude, and perseverance are all about. And above all, she has shown me that we should never turn our backs on hope. Because she believed, she searched for answers. She stayed on top on the issues. She fought for what she needed. She is the new advanced cancer survivor, using cutting edge treatments that have kept her alive against all odds. It hasn’t been easy. This isn’t some kind of cake walk for her. She fought tooth and nail to keep going. She believes that she still has something to achieve on this planet, so she finds a way to get it done. We’ve come to understand the power of love, faith, and hope in this life touched by cancer. Cancer didn’t make her a superhero. Her reaction to cancer did that. And because she did the hard work, we are inspired. We have learned that hope matters in everything we do. Love connects us. She’s told us so many times that our being there for her banishes the loneliness and isolation that cancer creates. Hope pushes us to try harder to help her, to lift her over the obstacles that stand in her way. It feeds our faith that there is something good for her on the other side of that wall.

This is how new cancer treatments come to bear fruit. Those extraordinary people who endure against all odds teach cancer specialists that those baby steps forward can become giant steps. It’s not enough to have strong medicines or powerful machines to attack cancer cells. Hope is the elixir for the soul and it opens the door to even the smallest little bit of opportunity. It is what creates quality of life for those survivors who believe they have a chance. And because they believe, more and more people are surviving what was once not survivable. Someday, cancer will be a thing of the past. Who’s to say my friend won’t be there to march in that parade?

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Caregiver Strategies for Continuous Cancer Management

Post author By sarambarton
Post date April 15, 2016

“Cancer police! Freeze, sucker!”….Imagine finding out that your late-stage cancer has been chased down throughout your body by your cancer team and stopped. With its hands in the air and no place to go, the disease that has ravished your body and soul just stands there like a surly, unrepentant career criminal, contained for the moment and hopefully going away for a long stretch in a maximum security prison. What happens now?

In real life, a criminal investigation is followed by a trial, with prosecutors and defense attorneys arguing back and forth, presenting motion after motion, deposition after deposition, and witness after witness. There are forensics, surveillance videos, and phone records introduced as evidence. Some cases can drag on for years before they get to trial and the judge hands down some semblance of justice. Victims can feel victimized over and over again by these brutal and unfair circumstances and often face the prospect of living with that terror on an ongoing basis, never knowing what dangers lurk in the shadows.

Most cancer patients get treatment that either works or doesn’t. Doctors make their decisions based on what’s going on in the body at that moment in time. Standard protocols are carefully monitored. Everything is based on what has been learned through clinical studies. There are patient scans and tests to determine the extent of the damage caused by cancer. Doctors will argue for or against this treatment or that one, often with contradictory opinions.

But new research that arrests cancer in its tracks is churning out a new kind of cancer patient who needs ongoing treatment to maintain the status quo. You’re no closer to a cure, but you’re also no closer to death — you’re in limbo as the ongoing treatment process continues to hold cancer at bay. It’s like serving some kind of twisted “life sentence without parole” for the person most affected by the disease.

How does this work? What if the doctors told you that you could continue living, but only if you stay on a harsh chemotherapy regimen for the rest of your life? Instead of a set number of chemo rounds, followed by months of recovery time, you’re told you will now going to have ongoing treatment every month. Expect to deal with significant side effects with every dose of chemo. How do you cope as a cancer patient and find peace in the face of such a cruel reality, especially when you know there will be no reprieve any time soon? And how does your caregiver give you the kind of care and support you need to get through that rigorous routine?

I first came across this dilemma more than five years ago, when I met a Stage IV stomach cancer patient, who talked about the rigors of his cancer survival plan. Every day, for the rest of his life, he would have to face the side effects of a very powerful drug that left him with balance issues, muscle weakness, nausea, and other unpleasant hurdles to leap over on an ongoing basis. Every night, right after dinner, he would take his medication and hit the sack, totally wiped out. This once-vital man still took vacations with his wife, still tried to work part-time, but it was a genuine struggle just to maintain that status quo and get through the day with continuous cancer treatment. His wife was his dedicated caregiver. It was easy to see just how committed they were to each other. He had once saved her life after a horrific car accident; now she was returning the favor. What was their secret for success? They consciously accepted the harsh realities of the treatment he faced and together they conscientiously worked their way through the problems, one issue at a time, making adaptations as needed.

Since then, I’ve had conversations with other cancer patients in similar straits because I want to know how we cancer caregivers can improve the care we provide. We need to understand the pitfalls and benefits of ongoing cancer treatment, what it does to the quality of life for those we love, and how it affects daily life for those directly impacted by it.

Now, thanks to cutting edge research, some cancer patients are finding out that having an incurable cancer is no longer a certain death sentence. In some instances, the disease can be contained, but that option comes at a great personal cost. There will be ups and downs during continuous cancer treatment. Just as one round ends, another will begin; when that one ends, another will follow. That means no break from the grueling side effects, no time off for “good behavior”. It takes a tremendous amount of courage to decide to proceed forward with that kind of treatment plan.

We caregivers need to mitigate as many of the debilitating aspects of this as possible, so that our loved ones can continue to achieve their goals, follow their dreams, and be involved in the activities that make them feel whole. We want them to have enough quality of life so that they feel satisfaction in their lives and they are able to cope. We must work to tamp down the negative outcomes and boost the positive outcomes.

I’m convinced this calls upon us to become a new breed of proactive caregivers — wiser helpers who provide more effective support for patients whose treatments are continuously evolving. Good cancer caregivers understand that there are some necessities we must provide to our loved ones if we are to be successful. These include:

Comfort for the physical and psychological pain —

When we know what is causing the greatest distress to our loved ones, we can better reach out to the cancer team to identify the solutions and apply them quicker, whether it’s palliative care for pain, better nutrition options that make food more palatable and digestible, or adaptive tools to overcome physical and mental limitations that interfere with the normal activities our loved ones want to take on

Companionship that continually nurtures the soul —

When our loved ones constantly need help from us in order to function physically, we caregivers give it; it’s important to recognize that this creates a serious imbalance in our non-cancer relationship and we need to periodically return to that on good days, to embrace the essence of our “old” selves again, to laugh and have fun together like in “the old days”, throughout the caregiving process

Compassion for all the frustrations, worries, anger, and sadness that get in the way of living a normal life with continuous cancer management —

When we know what hinders our loved ones the most, we can seek ways to overcome these challenges in meaningful ways that empower our loved ones again and again, by tapping into the hidden strengths and minimizing the weaknesses that get in the way of success; in this way, we empower our loved ones to experience moments of satisfaction that are born of their hard-fought determination to succeed despite the obstacles that stand in their way

Commitment to making this partnership work for patient and caregiver —

As we focus on the role we play as facilitators, we recognize our responsibility to do what our loved ones need done and we don’t take charge of the disease; we consciously put control back in the hands of the people who most need it — the cancer patients who have been thwarted in their efforts to live their lives as they so choose; at the same time, we must also recognize our own need to stay healthy and active, so that we can function as effective help mates

I’ve talked about the four stages of care on my website, The Practical Caregiver Guides. They are:

Temporary
Serial
Progressive
Permanent

Learn more here: Four Types of Care

Many cancer patients need temporary caregiving, especially when the cancer or the treatment side effects hamper normal activities, but once that’s over, so is the need for a cancer caregiver.

Some patients need serial caregiving over time, especially when the cancer recurs or metastasizes. The caregiver steps in to help when a loved one is struggling, but when things are good, the caregiver steps back, with the understanding that there may be a need again in the future.

Some, especially people with late-stage cancers, need progressive caregiving. They know they are likely to continue to lose function because the disease is gaining on them. Eventually, they will enter a hospice program, for end-of-life care.

But what comes between serial and progressive care, when a loved one’s cancer is still present, but managed with continuous treatment? Your loved one will be repeatedly going through the same cycles of treatment and side effects over and over again, without being able to go off the medications. As harsh as this will be on the body, it will be even tougher on the psyche. Life has to be “good enough” to endure the hardships. It becomes more important than ever for the cancer patient to feel invested in his or her life, to able to achieve personal goals, make dreams come true, and experience a sense of satisfaction and fulfillment.

The biggest challenge for a cancer patient and caregiver over time is likely to be the cumulative effect of the rigorous, never-ending treatment on daily life. It will be important to stay focused on the positive and find ways to remain aware of what is working, in order to help your loved one face a future of living in limbo. The better you understand the physical, psychological, and personal aspects of this situation, the more likely you will be to attend to issues as soon as they creep into the picture. Being proactive means understanding as much about your loved one’s cancer as possible.

What are the side effects of the particular treatment your loved one must undergo to keep the cancer in check?

If you knew that once a month, you would have to indure a horrible week in order to have two or three good weeks, would you be confident that you could get through it over the next month, the next year, or the next decade? When you’re facing a cancer diagnosis that includes rounds of chemo, radiation, and even some surgery, you are likely to talk yourself into getting through the treatment because you expect a positive outcome when it’s all over. But for cancer patients who have a “life sentence without parole”, there is no real light at the end of the tunnel, no pot of gold on the other end of the rainbow. It’s important that we, as caregivers, we recognize the real hardship of this kind of life, and it’s vital that we find ways to help our loved ones achieve as much quality of life as they can under the circumstances.

What are the actual cycles of these side effects and how can you help to alleviate the brunt of the rigorous treatment?

As overwhelming as it is for our loved ones to contemplate a seemingly endless life of ongoing cancer treatment, our efforts to recognize their worries and find meaningful solutions not only provide comfort, both physical and emotional, but also keep us focused on seeking answers. Sometimes a little medical information can make a difference. What if your loved one is not hydrating as much as the body needs? That’s likely to make chemotherapy more difficult to endure. What if your loved one isn’t able to eat? Working with a palliative physician to control physical symptoms and a cancer nutritionist to tweak food choices can make a huge difference.

But what if your loved one is terrified about the future and is convinced that continuous treatment is a losing proposition? By recognizing the emotional chaos and sorrow that this kind of diagnosis brings to a cancer patient, you are more likely to find ways to help your loved one remain engaged in the effort. Patients who feel satisfaction with what what they are doing will feel life is worth living. Patients who don’t have that are more likely to quit.

How big a factor does guilt play in your loved one’s cancer experience?

Believe it or not, cancer patients often feel guilty that they need the help of caregivers. They can often convince themselves that we are wasting our time, our energy, and our talents on caring for them. When guilt interferes with our efforts to assist, our loved ones will sometimes withdraw, believing that they must do things for themselves, even when they don’t have the strength or stamina to do that. How can we help them to let go of their anxieties? We can share our honest thoughts and feelings.

There are times that caregiving becomes difficult for us — that’s a given. But for those of us committed to the process, we want to be there for our loved ones. That’s why we need to find our own support system, one that will continually help to recharge our batteries and to empower us in our responsibilities. If your loved one feels guilty that you are spending too much time providing care, those feelings are likely to resolve if he or she sees that you are still achieving your own goals and finding satisfaction in your own activities.

What can you do to live as healthy and active a life while your loved one undergoes this treatment?

Tired and frazzled caregivers can actually pile stress onto overwhelmed cancer patients. By taking responsibility for our own limitations, be they time constraints or too many responsibilities, and for our attitudes, which can negatively affect the people who need our help, we are forced to look for better resources. Sometimes it means we have to reorder our priorities and let go of things on our “to do” lists that just aren’t that important. And sometimes it means we must really go deep and analyze the way we are providing care to our loved ones, so that we can better meet his or her REAL needs.

How can you help yourself to understand how your loved one’s cancer impacts the quality of life for him or her?

With an eye towards making things work better, you can ask yourself what your observations are about your loved one under the circumstances. Believe it or not, a lot of cancer patients are proud of their own efforts to get through difficult experiences without breaking. Just as an experienced marathon runner takes the race in stride, sweating out the hill climbing and breathing a sigh of relief on the downhill descents, cancer patients can and should recognize just how amazing they really are in times of trouble. Don’t be afraid to praise real efforts your loved one makes. Don’t be afraid to admit that you are in awe of your loved one’s determination to live life out loud!

You can find more help for cancer caregiving at The Practical Caregiver Guides

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Why Is Cancer Always the Drama Queen?

Post author By sarambarton
Post date February 22, 2014

It’s probably happened to you ten or twenty times over the last decade. You’ve entered the realm of fictional cancer and cancer survival through media. You’ve witnessed the hero or heroine battling cancer from your perch in the fictional trenches. It’s on the big screen in your local movie theater. It’s in the TV special that has you glued to your sofa. It’s in that bestseller you bought at the bookstore. It’s in that short story in your favorite magazine. By the time you finish living through the cancer experience vicariously with the main character, you’re emotionally exhausted.

But here are two questions for you. Why do fictional cancer tales always seem to stick with the same script? And why is cancer always the star of the show?

Oh, I understand all about the perils of cancer management. And you won’t ever find me dismissing the cancer experience as “minor” or “a blip on the radar”. But why do we always seem to put cancer up on a pedestal in fiction, whether it’s movies, TV, books, or short stories? Does the plot always have to be about the disease? Frankly, I’m far more interested in the people, real and fictional, who survive the experience.

Some of the funniest, sweetest, feistiest, smartest, most compassionate people I know in the real world of cancer survivors would make fabulous characters in amazing tales. It’s not because they have cancer, but because of who they are as human beings.

These people have lives beyond their disease. They are lawyers who happen to be talented musicians, journalists who live to box, social media experts who love their dogs…mothers and fathers, sisters and brothers, friends and neighbors who nurture fellow cancer survivors with some amazing outreach programs, — ordinary people who do some very ordinary things, even while they navigate cancer experiences as varied and as unique as they are.

If you were lucky enough to meet them, as I have been, the one thing you would not take away with you is the sense that life is a constant edge-of-your-seat drama. These are not hysterical, desperate people living terror-filled lives. Sure, it happens sometimes that things go wrong and inevitably another beautiful soul loses the battle. But for the most part, the cancer survivors I know are not afraid to speak up, to speak out, to take charge of their world. They make the effort to infuse their lives with laughter and love.

How I wish we could capture that spirit, that wonderful sizzle of spunk that often drives so many of these cancer survivors to live their lives out loud. How many times have I heard them say, “(BLEEP) cancer! I’m going to do what I’m going to do despite it! I’m going for it!” And that’s where the real stories of cancer can be found. Because so many choose to get around the obstacles cancer creates and achieve amazing things. So, why can’t our fictional heroes do the same?

One of the saddest personal stories I ever read was from a real breast cancer patient, whose treatment totally disrupted her marriage to a man she thought would be there forever. Like watching a train wreck in slow motion, I followed her tale and thought, “If only this doofus had some idea of what to expect from his wife’s cancer situation. If only he had heroes who had walked in his shoes and successfully managed to learn what to do and what not to do.”

To me, movies, television, and stories are the perfect place for us to find inspiration on how to live with cancer, but if we only see the terrifying tales of gloom and doom, we become conditioned to expect cancer to be a death sentence, a downer, a disaster. The truth is that for every life destroyed by cancer, there are many more that were saved by treatments. Shouldn’t our fictional characters share those experiences?

I was recently doing some research for a project I am working on as a mystery writer and I stumbled across something curious. Many of the writers who create cozy mysteries announce in their biographies that they are cancer survivors. Why is this? I have a theory. Cozy mysteries are all about people. We don’t like lots of blood and gore in our stories. We don’t like horrid characters who give us nightmares and do vicious things to our fellow human beings. In some ways, the cozy mystery genre is the perfect place to find comfort and happy endings for weary cancer survivors. Maybe that’s what attracts writers and readers to the genre. We want to believe that life can be good. We need to believe it, because we will take that inspiration and use it in our own lives, when we or our loved ones are diagnosed with cancer.

But it’s not only short stories and books that make a great platform for characters with cancer. Television and movies would be well served to utilize them. Why? Think about the people you know who have cancer. Think about the often profound changes they have experienced as they go through life after diagnosis. The truth is cancer changes everything. It’s that unexpected wake-up call no one wants to get, and yet when it comes, it often seems to shake us up in ways that are often unpredictable and unexpected. It’s not the cancer that makes people amazing. It’s what they do in spite of the cancer.

As for interesting characters, I can attest to the fact that many of the cancer survivors I have had the pleasure of meeting are inspirational and memorable. If you can keep your sense of humor after a cancer diagnosis, if you can maintain a sense of hope in the face of such terrifying news, if you can carry on despite the uncertainty of having too many lemons and not enough sugar to make lemonade, you’re probably going to have some great throw-away lines for any script.

The truth is cancer survivors are people who learn to live with the disease. They learn to manage it over time, to know when it’s time to get a “tune-up”, and even to expect that it might return at some point down the road. But as more and more cancer survivors go through multiple bouts of the disease and live to tell about it, our fictional tales should reflect this fact.

My hope is that one day, authors, publishers, scriptwriters, producers, and directors will come to understand that cancer shouldn’t always be the drama queen of a story. Sometimes cancer can be the fictional challenge that teaches a tenacious survivor how to get past even bigger obstacles. Or, better still, we can begin to treat cancer as the occasional footnote in our lives. For those whose cancer is caught quickly and wrestled to the ground, we might find fictional characters who use perspective and common sense to put cancer in its place.

Oddly enough, I think if William Shakespeare lived today, he would have done just that. Cancer would have been just one more challenge that his characters faced, some bravely, some cowardly, some with humor, but never without something interesting to share. I long for the day when cancer is not the lead player on the stage, but merely an act or two in a lengthy production:

All the world’s a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,
His acts being seven ages. At first, the infant,
Mewling and puking in the nurse’s arms.
And then the whining school-boy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress’ eyebrow. Then a soldier,
Full of strange oaths and bearded like the pard,
Jealous in honour, sudden and quick in quarrel,
Seeking the bubble reputation
Even in the cannon’s mouth. And then the justice,
In fair round belly with good capon lined,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side,
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.

From “As You Like It”, monologue of Jaques, Act II, Scene VII

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What Do Cancer Survivors and Diamonds Have in Common?

Post author By sarambarton
Post date January 24, 2014

Diamonds…how do you make one? You bury carbon dioxide 100 miles inside the earth’s core and then you heat it to 2,200 degrees Fahrenheit. It’s all about high pressure and high heat. But a raw diamond isn’t really all that amazing, is it? It becomes something special when it is transformed.

Raw diamonds do very little to let in the light. They are obtuse rocks, chunks of pressurized carbon that don’t shine, glitter, or gleam.

Ordinary…common…plain.

The other day, I read a very touching obituary about a woman whose struggle with cancer began back in the 1970’s…forty years ago…four decades of battling this disease…can you imagine the pressure she faced to live her life in spite of cancer? This isn’t an undertaking for the faint of heart.

Cancer survivors live their lives under enormous pressure. They constantly rework the details of their lives around the disease, making the necessary accommodations that enable them to continue reaching their goals, even when they don’t know if they’ll reach them all.

It’s a myth that diamonds are unbreakable. Sometimes it happens. A tiny fracture, one that might exist as the stone is forming, creates a vulnerability that puts the diamond at risk. Sometimes if it’s struck at that vulnerability, it will crack, divide, or even chip. If the damage isn’t great, it can often be repaired.

Sometimes people, like diamonds, can break. No one is invincible. But the human spirit that chooses to rise above turmoil, that seeks to endure the unimaginable, often finds there is opportunity in wise design. Knowing our own flaws helps us to figure out our strengths and use them to our advantage when we construct, and sometimes reconstruct, our lives with cancer.

The myth about cancer survivors is that they somehow achieve greatness because of their experience with the disease. People expect cancer survivors to be extraordinary beings, super heroes who do amazing things because they have the Big C. In reality, cancer patients are human. Who and what they are is decided, not by disease, but by self-determination and wise counsel.

Cancer survivors aren’t all equal. Some are so overwhelmed by the rigors of cancer management that they lose themselves in the pain and uncertainty. Some stop living their lives. They lock themselves away and grieve for the time they won’t have, rather than living the time they do.

And some, despite being overwhelmed, in pain, uncertain, rise above the limitations of disease and move forward, upward, onward. They don’t do it because they have super powers, but because they gird themselves with courage they hope will hold them up. They are willing to take one little step more by drawing on their inner strength.

Most long-time cancer survivors can teach the world much about personal resolve, about what it’s like to find yourself knocked all the way back to Square One when you least expect it. Fighting cancer isn’t about sweating the skirmishes, but about surviving to fight another day. Seasoned veterans of the battle know that the first time you hear that diagnosis is horrible, and it never really gets easier to hear it again…and again…and again. But it sometimes happens. You do the best you can and you go on.

Some cancer survivors seem to thrive as human beings, and we often mistake this phenomena as a byproduct of the disease. Cancer didn’t improve them. Sure, it pressured them, heated them until they were sure they could take no more, but they CHOSE to transform themselves.

It takes a jeweler to see the beauty inside a raw diamond, to chip away the cloudy bits, to cut away the flaws, until it is transformed. Every facet of a well-cut diamond allows in light, and where there is light, refracting on those hard surfaces of the diamond, there is sparkle. But it is the human hand and the human eye that finds the beauty in the raw stone and turns it into a gem.

Every cancer survivor has the power to transform. Choosing the kind of life you want to live WITH a cancer diagnosis allows you to take back your personal power. That mindset, that self-determination in the decision-making process, is what empowers us as people to take what we have and make the most of it. If we believe we can find opportunities even in crisis, we will seek them out. And when we recognize them, we will use them to our advantage.

When selecting a diamond, most jewelers advise paying attention to the four c’s — cut, clarity, color, and carat. A good raw stone will yield an attractive gem in the hands of an experienced diamond cutter. It’s a matter of knowing what goes and what stays. The same is true for cancer management.

Long-time cancer survivors, honed by experience with the disease, often develop extraordinary clarity — they come to recognize their vision of what life should be and they work towards making it happen, even when there are obstacles in their way. They add deliberate color to their lives by being selective of time, energy, and desire. Things that don’t serve a purpose or nurture are cut away, until what’s left is the beauty they’ve created in a life touched by cancer.

To become extraordinary as a cancer survivor, it’s all about the four P’s — perseverance, personality, psyche, and passion. When you live mindfully, focused on what matters most to you as a human being, your determination makes you extraordinary, not cancer. Cancer is just the crisis that helped to form the rock. Without a master jeweler to cut and shape it, it is destined to remain just that…ordinary…common…plain.

You, cancer survivor, are the master jeweler, the artisan who will transform the ordinary into the extraordinary, the common into the remarkable, the plain into the magnificent. It doesn’t happen in an instant. You must work at it. You must become skilled and knowledgeable about the disease, about how to survive it. The more you know, the better your decisions will be. Seek out those people who have managed their cancer through the years. Recognize the efforts they make to stay on top of their disease and to maintain their quality of life. Let them share their wisdom with you, so that you, too, can be extraordinary. Fate brings cancer into ordinary lives, but ordinary people choose their own destiny. You can, too.

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Brain Cancer or Not, Valerie Harper Has Got Happy Feet

Post author By sarambarton
Post date September 19, 2013

Let me start by saying I’m not normally a fan of “Dancing with the Stars”. Frankly, I don’t particularly like watching folks trip their way across the stage in belly-button exposing outfits (male and female), shimmying unlike your sister Kate, with lots of hair extensions, makeup that’s been troweled onto faces (male and female), and a whole lot of attitude. Give me Ginger Rogers and Fred Astaire in an old Hollywood flick any day. And yet….

I heard Valerie Harper was going to be on. At first, I thought it was a mistake. Wasn’t she in the process of dying from terminal brain cancer? But then I heard it again. This woman was going to dance on the show.

Was it going to be sad? I considered what I had observed in other brain cancer patients. For some, balance was an issue. For others, changes in personality. And that wasn’t even including the fatigue factor….

The anticipation was killing me. Long a fan of both the old “Mary Tyler Moore Show” and “Rhoda”, I’ve always enjoyed Ms. Harper’s acting — her comedic timing is impeccable. Nobody delivers a line like she does. Ba-ding ba-dang!

Then someone mentioned her age. Seventy-four. Say what? Didn’t Cloris Leachman dance years ago on the same show? God love her, the fellow alumnus of “The Mary Tyler Moore Show” huffed and puffed her way through some very challenging dance moves, but in the end, the eighty-two-year-old didn’t have the finesse necessary. What could we possibly expect from Ms. Harper, a seventy-four-year-old brain cancer survivor?

Know what? Valerie Harper was amazing, especially compared to some of the other contestants. She knows how to move on the floor. Obviously, she’s had some experience and real training. When she got done with her foxtrot, I thought, “Isn’t it a shame that she gets that ‘cancer’ label?”

She should be applauded for dancing that well in her seventies. She should be applauded for dancing that well with brain cancer. But both? What a show-off! Okay, I’m kidding, but think about it. She was good no matter how way you look at her, as a cancer patient or not.

What does that say to cancer patients everywhere? It really is never over until the fat lady sings, and she was nowhere near Ms. Harper during her dance. Every day, patients are gaining ground when it comes to managing cancer over time. Sometimes it’s just a matter of staying the course, making it through the tough days. That’s why it’s so important that cancer patients maintain good nutritional intake, because cancer drugs can be so rough on the system, and losing too much weight or being unable to eat can turn the tide. In a published interview, Ms. Harper’s husband explained how she managed to continue her medication while appearing on the show. It’s all about knowing when the “up” time and “down” time is for cancer patients and scheduling activities around these.

I have no idea what will happen as the dancing series continues. From what I saw the other night, she seemed to be in the running, well ahead of some other folks. Pity vote? Hardly. She earned each one of those points. It had nothing to do with her cancer, or her age either. Sometimes people get to succeed without having that cancer label as a constant in-your-face reminder, and boy, are those moments sweet! Whatever the result, Ms. Harper is a winner in my book. She’s earned respect for being herself — likable, active, living in the moment with joy and determination. I wish her all the best for the future — sunny days, blue skies, and happy feet to carry her over the rough terrain that is cancer management. You go, girl!

For help with cancer caregiving, visit The Practical Caregiver Guides

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Match the Cancer Support to the Cancer Needs

Post author By sarambarton
Post date August 24, 2013

I remember a very trying time, when my mother was dying of lung cancer. Someone who knew that she had been treated for cancer asked how things were going. Short answer? Not good.

Normally, most people might ask if there’s anything they can do to help. In this case, the person proceeded to launch into a long description of her husband’s long-time prostate cancer situation, and ruminated about his once-in-awhile pill treatment regimen. At the time, I was spending my days and nights providing physical, emotional, and even mental support for a woman who was very frail as the result of the progression of her cancer.

What do you do when someone “ups” you after inquiring about a loved one’s cancer? Walk away. In this case, I learned the hard way that this woman was claiming her husband’s cancer as some kind of badge of honor. She was in her glory, suffering alongside him. Guess what…after another five years, her husband’s still going strong, still living a great life, without any serious health issues. And she’s still playing the cancer card, to make herself seem important. Goes to show you that not all cancer is equal and that cancer survival depends on the type, stage, and treatment options.

It’s sad, but true. Many people who have loved ones managing what we might term “highly survivable” cancers often lump themselves into the same group as those of us who are struggling to help our loved ones with progressive cancer. What does this mean? We have two very different kinds of caregivers.

If you are providing physical care to a cancer survivor who is not thriving, especially if the treatment is harsh and the side effects are debilitating, it’s important for you to recognize the stress you and your loved one are under and to acknowledge it. This is not a death sentence for your loved one — far from it. You may be on that roller coaster as a family, riding the ups and downs of cancer management. When you accept the reality, that your loved one is struggling, you can take advantage of a very important caregiver tool — the chance to decide how your relationship will be defined.

For those of us who have walked in these shoes, we know that having the chance to make these decisions allows us to find peace at a critical time in cancer care. When we see the struggles of our loved ones, when we understand their impact on the family and our extended social circles, we take actions that often times make an enormous difference for all of us.

Not all cancer is equal, so when cancer becomes the greater part of a loved one’s life, that is the time to up the family bonds. In the short summer of sunshine and butterflies, we move about easily, finding food abundant and life pleasant. In the long winter of despair, we need warmth, comfort food, and laughter to see us through the dark hours.

Having a woman compare her husband’s non-debilitating prostate cancer to my mother’s debilitating lung cancer was a real eye-opener. It was hurtful, to boot. I knew I wasn’t going to change her opinion or mindset. That was too wrapped up in her personality and her need for attention, both of which existed before her husband’s cancer came along. But it did give me a good kick in the fanny that I needed. It made me determined to fit my caregiving to what my mother really needed. More enabled activities to please her through difficult hours. More emphasis on asking her what she needed to do, rather than focusing on my own needs. More determination to make good things happen for her while she had the energy to accomplish things on her “to do” list. Knowing that my sacrifices would soon end enabled me to make greater sacrifices for her while there was still time.

There is honor in helping another person live. It’s easier to defer one’s own satisfaction for a year when one knows that life is finite, to put goals and plans on hold. We can make better decisions that produce better results and greater rewards by being mindful of reality. We are not waving the white flag of surrender. We are living in the moment and making the moment count. If anything, my mother lived longer because she was able to do what mattered to her, instead of spending her days feeling like a helpless victim. And I was able to get through the trying times by constantly reminding myself that my days as a cancer caregiver would soon end. Like a marathon runner, I learned to pace myself as I ran up the hills and around the curves in the cancer road. I took advantage of the good days to make progress, to find the joy. When you look for something to celebrate, some little snippet of goodness, you will often find it. When you assume there is no light, you will see only the black night of the soul. Choose wisely. What does the heart need, even as the body fails? What does the spirit seek, even as the body fails? When we give a loved one wings to rise above the mortal limitations, we enrich our bonds in amazing ways. This is the time to build lasting memories to remind us that love is a powerful thing.

The fact is, sadly, that for some cancer patients, there is no cure, no magic wand to wipe away this hideous disease. When we are mindful of the level of struggle our loved ones are currently experiencing, we are able to take advantage of the information in ways that can be life-changing. By realizing just how far my mother’s health had deteriorated, I was able to understand that the cancer and related complications were progressing. That meant that the hourglass was running out. As a caregiver, I would soon be out of a job. I needed to know that, in order to maximize the support my mother needed and to pace myself, to accommodate my own life.

A cancer caregiver may go through a number of periods of providing care, and that care may be of varying degrees of hands-on involvement. Very often, especially for the newly diagnosed, the treatment itself is overwhelming to the physical body. Our loved ones look like the Walking Dead until the impact of chemotherapy, radiation, and even surgery kicks in. We may go back to our normal lives and forget about cancer until the next scan shows something or a new symptom appears. Then we jump in again and help out until our loved ones are back on their feet again. But if and when there comes a time that the cancer proves too great a foe, we need to accept the reality and maximize what time we have left with our loved ones. We need to take the trips, have the parties, be together in ways that allow our loved ones to embrace the life that is still with us.

Some people think it’s best to soldier on, to pretend things are good when they are not. Denial prevents us from embracing the love, from finding the opportunities to live life out loud. When you see the changes in your loved one, when you feel that dread in the pit of your stomach because you can recognize the physical signs, consider this the winter of your loved one’s life. Don’t run away or hide. Build a mental refuge where the family can gather. Fill it with warmth, laughter, and comfort, with people who love your cancer survivor. Reach out to those who are receptive to your loved one’s plight. Ignore those who are not.

What did we find in my mother’s last months? The good friends who cared about her kept calling. The fair weather friends fell away. The relatives who understood the importance of sharing the love came calling. The ones who didn’t stayed away. The real tears were shed outside my mother’s room. The crocodile tears were shed for effect, with a lot of hand-wringing, lamenting the situation in public settings.

When people ask a cancer caregiver what is needed for a loved one whose condition has deteriorated, it’s hard to sometimes say. I can tell you what my mother told me. She wanted cards and letters. She wanted to know that, even as she was confined to home, she was not a forgotten prisoner, locked away. Did she still matter to people? Did they think of her? Did they want to share what mattered most, in their hearts, their minds?

When a cancer survivor begins that last descent, it doesn’t happen overnight. It happens over time. Months, weeks, and finally days. If a cancer caregiver recognizes the signs when death is still months away, there is time to build some very wonderful memories. If a cancer caregiver only pays attention in the final weeks, there can be a great rush to get so many important things done, it’s exhausting. And if a cancer caregiver only wakes up to the reality days before a loved one takes his or her last breath, the result can be devastating for everyone.

My mother benefited from being able to express her worries, her hopes, and even her dreams as her life drew to a close. That enabled us as a family to find ways to comfort her, to encourage her to speak up about what she wanted, for herself and for the family, and even to address the future without her. Many people think that speaking of death is a grim subject that only hastens the end of life. But for many cancer patients, having the opportunity to live the reality means freedom to enjoy the time that is left. Life becomes a great gift, all the sweeter because we know we will soon say farewell, and in the knowing, we have the chance for that one last dance.

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Having Cancer Is Like Having a Stalker Stalk You

Post author By sarambarton
Post date May 3, 2013

Anyone who has ever had a stalker knows the sheer fear, that tension in the pit of your stomach that pulls your gut into one tight knot that never seems to let go. While you’re looking behind for that telltale shadow, you get broad-sided by that sudden furtive movement as your stalker suddenly appears right in your face.

If you’re a cancer survivor or a cancer caregiver, take a few pages from the “Life with a Stalker Handbook”. Understanding and utilizing the lessons learned in fighting a stalker long-term can help cancer survivors function more fully in their lives.

There are a lot of similarities between cancer and stalkers. Cancer, like a stalker, can deceive, can pretend to be cooperative, when in fact it is setting up shop in another organ, sometimes even hiding in plain sight and masquerading as a benign being. It can throw its hands up in the air and appear to be walking away, all while it plots to find another tiny opening in the victim’s life that can be exploited. There can be distractions, lulls, and even periods of inactivity, when you think it’s finally done. You tell yourself you can get back to your life, get settled into the normal rhythms and routines, only to find your life erupting into confidence-shattering chaos and confusion once again.

Stalkers are, like cancer, very dangerous because of their unpredictability, mindset, and potential volatility. In order to fight a stalker, you have to understand the menacing behavior of the individual stalker. You can’t assume that every stalker is using the same playbook. What drives this particular individual to do what he does? What does he hope to get out of it? Why is he attacking in this particular way? What does his victim have that he needs? Stalkers have certain patterns in common, but other activities and motivators are unique to the individuals.

The same is true of cancer. We treat it like it’s one disease, when in fact it’s hundreds of different diseases, with different triggers, behaviors, and malignancy rates. One size does not fit all.

If you’ve ever been the victim of a stalker, you know that panic. “What did I do to make this happen?” You review the scenes over and over again in your head, trying to figure out what it was you did to attract the attention of your stalker. Were you just too handy? Was it something you said or did, or even didn’t do? Why you? Why not your neighbor down the hall? Why not someone else?

Isolated incidents involving violence can be overcome with directed and mindful cognitive exercises. You can look at a single traumatic event and put a face to it, a meaning to it that will eventually allow you to come to terms with it and make peace, provided you have the right support and psychological tools.

But how do you fight a stalker over time? So often, the stalker lurks in the shadows, hiding behind bigger obstacles while he’s stalking, but the rest of the time, he usually blends into the crowd. A stalker doesn’t want to get caught, because if caught, he can be apprehended, contained, neutralized, even paralyzed in his tracks — so he feigns being something he’s not. The philanthropist loves everyone. The average Joe who’s minding his own business. The good guy who just happened to be passing by. The upstanding citizen who’s no threat to anyone. Cancer’s a lot like that. The symptoms can mimic other diseases, other issues, and that can be distracting. Doctors very often take the symptoms presented and assign them a diagnosis that has nothing to do with cancer. If they don’t suspect it’s cancer, they don’t test for cancer.

Some stalkers are better than others at getting away with their crimes. They learn to wear rubber-soled shoes as they creep about. They get to know their victims inside and out, always in search of vulnerabilities. Victims often flee to escape their tormentors, only to find themselves in greater danger. What’s a cancer survivor to do when the potential for “someday” looms on the horizon? Run away? Disappear? Bury one’s head in the sand and hope it won’t hurt too much when the rest of the body is left vulnerable to attack?

Stalking is, in reality, a mind game first and foremost. It’s psychological warfare at its best. It’s predator after prey. Sometimes victims can give their stalkers too much credit for intelligence. We imagine their power is greater than our ability to overcome, so we don’t look for reasoned ways to fight back. We don’t use our greatest tool, the human mind. We flee, and in doing so, miss so many opportunities to enjoy life by staying in the game. When cancer survivors wrap their heads around the notion that cancer is as much a mental battle as a physical one, they begin to understand their foe. In any battle, knowing your enemy is the most important means of directing his defeat.

Many victims of stalkers learn to live off the grid, to fly under the radar, in the hopes that they can evade their pursuers. Imagine spending all that time and energy trying to not do the things that will alert the stalker to your whereabouts or arouse his interest again. You might constantly ask yourself, “Is he going to find me again? Is he going to come after me once more?” The constant stress and distress of living with the potential threat cuts the joy out of life. You’re always teetering on the edge of despair. “I have now, but what comes next?” It’s the unknowing-ness of the future that hurts the most. It’s the mistrust of the half-consumed moment. Fear can paralyze us. “In the blink of an eye, life can change, and I don’t want it to get worse.”

But that’s not the only problem. Denial can often rear its ugly head in stalking situations. What happens when the stalker is in plain sight and everyone knows you’re his victim? What happens when everyone around you can see the stalker, but they don’t believe he poses a threat any more? People throw deterrents at stalkers all the time, in the hopes of dissuading them from acting out on their need to prey, as if that’s enough. That’s a lot like tossing cancer therapies at patients willy-nilly, in the hopes that something, anything, will work. Once treatment is completed, cancer survivors are just supposed to move on with their lives. They’re not supposed to wonder if the radiation will create new complications, or think about the potential for a different kind of cancer because the body was weakened by the first. “Don’t worry about it till it happens!” Is that really the best advice for someone who lives under the threat of another bout with cancer or complications? If I know I might have a problem at some point in the future, won’t I be better able to deal with it if I am armed with the knowledge that will empower me to do battle?

The truth is the more you know about the specific threat, the better, because that’s when you can develop a strategy. Even if you never have the chance to completely contain the stalker or his dangerous behavior, you can manage the danger he poses by being able to act in ways that make a difference. That’s how you rebuild a realistic trust in yourself, those who support you, and even in the potential for a good life. Fear that once prevented you from taking chances gives way to confidence borne of wisdom. “Yes, cancer may come back, but if it does, I’m ready for it. I’m prepared. I have my people and I’m going to give it everything I have.”

The most effective way to handle a stalker is to know him, inside and out. What makes him tick? Why is he doing this? Too generalized an understanding puts the victim at greater risk of not only triggering another incident, but also in becoming more vulnerable. There is a world of difference between a stalker who has a fantasy life and a stalker who has a secret life. Someone who is mentally unbalanced might spiral out of control without rhyme or reason. Someone who is trying to protect a skeleton in a closet will be very driven and determined in attacking his victim. His motivation for acting is self-preservation and he is willing to kill to make that happen. But stalkers are, by virtue of their covert lives, secretive. They depend on people not knowing what they are up to in order to hide.

Cancer treatments that focus on the specifics of an individual’s cells, genes, overall health, and any of the factors that affect that particular type of cancer are the best type of threat management for cancer survivors. Every day, new developments in fighting the disease show that certain types of cells work in certain, somewhat predictable ways. As doctors learn more, they also learn ways to cut the cancer off from what feeds it. Just as you want to move a stalker away from his victim, to neutralize his ability to cause harm, doctors take cancer treatments to new levels every day — by starving tumors here or by empowering the immune system there.

But where does that leave cancer patients? Still battered by the stalking, still fearful of the future?Victims of stalkers often have difficulty living normal lives because they spend so much time and energy trying to survive, just like cancer patients — it’s often a matter of knowing when you can safely poke your head out of your hidey-hole. But it’s more than that. Those who have, over time, had their lives disrupted again and again, had to pick up and move once more when their stalkers located them, never really fully trust in anyone or anything. You always hold back a little part of yourself because you expect that disappointment to arrive on your doorstep once again, almost always when you least expect it. Stalkers love to terrify their victims, so they look for the chance to pop up out of the blue. Living with that stress over decades is tough. You never ever completely let your guard down. You never ever really get used to believing that life can be good. “It was good once, and it’s okay now,” becomes the new normal.

But in accepting how things have changed, in taking it one step at a time, and most of all, in having the right kinds of resources to identify real-time threats, victims become empowered and stalkers will, over time, lose their power to terrify. Even when you know in the back of your mind that there could be another incident, another blow, you’re already thinking of what you can do to deal with it, to get past it. That’s the strategy that a lot of victims use once they really come to terms with their predators. “I refuse to give you power over my life, my emotions, my heart. I will not live in fear anymore. I am willing to do what it takes to keep myself safe.”

For cancer patients, the knowledge that cancer can, and might, recur is often overwhelming. It’s hard to live with the maybes, the uncertainty, the possibilities. How do you manage it? How do you plan for it? Should you even consider it?

Take a lesson from victims of stalkers. Don’t isolate yourself. Running away is a dangerous strategy, because your stalker will hunt you down. If you have fled, you have probably cut yourself off from your best support network, those people who will look after you and fight for you. The bigger your team, the better your chances of reducing your risk of injury or worse.

Instead, surround yourself with people who are knowledgeable about your situation. Don’t be afraid to immerse yourself in the learning. Talk to other cancer survivors and learn what they know about the disease. Think of it as a self-defense strategy. If you’re going to kick cancer’s ass, do it right. Don’t raise a little finger when your assailant comes at you with a big stick, grab a crow bar and cripple him. Let him see you are not intimidated or weak in his presence. Toss the creep to the curb.

So many times, victims of isolated incidents think it’s just a one-time thing, so they never bother to learn how to look out for themselves. Lightning doesn’t strike twice, right? But when you have a stalker, that’s an ongoing threat, one that isn’t going to stop until the stalker is permanently neutralized in his tracks. Being vigilant doesn’t mean you’re always terrified. The more you learn about cancer, especially your type of cancer, the more you can understand its weaknesses, its needs, and even its goals. Some kinds of tumors consume hormones to live and starving them of the hormones can prevent new occurrences. But there are side effects, aren’t there? The tumor needs that same estrogen that you need to function well, and in preventing the cancer from receiving it, you suffer, too. How do you balance that?

Every day, new ways to fight cancer, to hold it back, to knock it down, are becoming available. What we knew last year is less than we know now. What we know now is less than we will know next year. By keeping up with information that can make a difference, by learning to recognize new symptoms as they sneak in, cancer survivors have a better chance of managing their disease in meaningful ways.

Just as you need to be vigilant in recognizing new signs that your stalker has resumed his bad behavior, whether you notice new scratches on your door lock or you find things have been moved in your car, those are signs you don’t ignore if you’ve been a victim. Every long-time Stage 4 cancer patient I ever met had one thing in common. They all were proactive in dealing with new symptoms and they were willing to fight hard to survive. Those “I can do this” muscles were developed over the years of battling their unseen, seemingly unknowable foe. The harder they fought, the more they learned about cancer’s cunning, and once they learned, they got busy.

Many times, cancer survivors want to turn their backs on the disease once it’s under control. And so often, their families and friends want them to move on. That “let’s just forget about it and act like it never happened” mindset is what often puts cancer survivors at greater risk. Tackling the potential threat is as important as taking your chemo drugs, being zapped with radiation, or even going under the knife to cut the cancer out of you. It’s your new “survival mode”.

Long ago, when cancer happened and options were few, people didn’t have to live with cancer as a stalker. Death was often swift and cruel, and time fleeting. By the time a patient was diagnosed, there might only be weeks or months. But now? Now the possibilities for survival and cure are better than ever, and growing every day. That requires a new way of thinking about cancer management. It’s imperative that you recognize your stalker, assess the threat posed, and handle the aftermath of a cancer diagnosis effectively. You want to direct yourself to act, not to react, and you best do that by understanding what is out there.

Anyone who has ever dealt with a stalker over time has to come to a decision: “Do I live my life as normally as possible, take advantage of the opportunities, and stay out in the open, vulnerable to attack, or do I hide myself away, in the hope that I might survive a little longer? Do I survive or do I thrive? Do I embrace life or embrace fear?”

True inner strength comes from understanding fear and uncertainty and taking steps to manage its impact on our lives. It’s the choice to sit it out or dance. Music lovers know how hard it is to not feel the rhythm, to sit still when the tune beckons. What is life without song? As the Irving Berlin song said, there may be trouble ahead, and the fidlers may flee when the going gets tough, but while we have moonlight, music, love, and romance, we should embrace the opportunities to dance. Don’t ever let cancer take that away from you.

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What Roles Do Personality and Perception Play in Cancer Treatment?

Post author By sarambarton
Post date March 22, 2013

Is cancer a case of mind over matter? Can we engage one to more positively affect the other? And if so, what roles do personality and perception play in cancer treatment?

Here I am in sunny Goodyear, Arizona, at a Bloggers’ Summit sponsored by Cancer Treatment Centers of America. The weather is fabulous, especially given all the chilly winds and white snow I left behind. Last night I sat out under the stars with the group of fellow bloggers, almost all of them cancer survivors. We laughed for hours, sharing stories. There wasn’t a Shrinking Violet or Vinny among them. Each has his or her own story about cancer, and in coming together, it was an engaging banquet of food for thought.

Which makes me wonder about the power of personality and perception in fighting cancer. We can’t really change personality. People are who and what they are. Each of us sees the world in unique ways, and once you understand where we’re coming from, you can adjust your message to be better heard. But it’s never one-size-fits-all. Men and women tend to process information differently,but within that construct, individuals are sometimes stronger in some areas than others. When I say the word “cancer”, your perception of the disease is based on your own personal experiences with people you know who have battled it, but also on what you know about the public information that’s out there. What pieces of the puzzle are you missing? What you don’t know can and will hurt you and your loved one, especially if you’re wrong in your perceptions.

As a cancer caregiver, you can’t change the personality of your loved one, nor should you, but will an understanding of him or her help you provide the right kind of support? It makes me wonder if there should be a different approach to cancer for a Type A personality than for a Type B personality. Maybe people who are go-getters will do better if they are armed with information they can use to motivate themselves — statistics, goals, and your basic business plan. That’s just how they roll in real life and we should respect that. Maybe people who are go-with-the-flow-ers will do better if they are allowed to function in the way that enables them to do what works for them — forget about the details and the Devil, and just live in the moment. That’s how they do things and there’s nothing wrong with that. To each his own.

Over and over again last night, I heard a similar theme. Cancer patients and survivors get treated differently than people without. Right there, you know that’s going to have an impact on life. We aren’t at the point where we ignore cancer once it’s happened. It’s like stink on a skunk, trailing behind the cancer patient. One whiff and folks disappear. The last thing anyone wants is to feel people pulling away emotionally, mentally, and sometimes even physically. That’s a lot of stress to live with when you’re already trying to get back to the new “normal”.

What does it take to rise above that and engage the mind in the healing process? If you think about the role the brain plays for the human body, it’s really a head game in many ways. The head operates the rest of the body systems, so tapping into that energy and directing it in positive ways should make a difference, shouldn’t it? If it’s the head making the decisions about what happens, how does the brain move through the decision-making process to the best advantage?

We sometimes seem to forget the brain is divided into two hemispheres, right and left. Concrete and creative. That’s where perception comes into play. Perception is information-based. And when there’s a lack of information, the creative brain will fill in the blanks. That’s sometimes dangerous, because we can begin to believe things that just aren’t true. The body will act on the misperception. If you input more information and expand the knowledge of a subject, the brain will adapt to accommodate the change, but only when there is recognition things have changed. The mind has to send a signal — “Hey, guys! We’ve got new intelligence on this thing. Look it over and make adjustments.” The more you know that is evidenced-based, the more rational the decision-making. You can actually change a person’s emotions by changing his or her perception of the subject. All the more reason to make a positive effort. So, what does happen when you have strong personalities that can weather the storm and see beyond it? That’s when your mind works with your body to overcome the challenge that is cancer. You have to believe that what you’re facing is “doable”, and even more importantly, worth doing.

The people I sat with last night are the living proof the battle is worth it. Vibrant and alive are two words that describe them. But their cancer experiences surely played a role in awakening the personality to take on the fight. For several people, it seemed that cancer put a focus on their lives they didn’t have before. They no longer waste time on people who waste life. They take more chances because they want the chances they take to mean something. They live a far more intense experience because of cancer, not in spite of it. Maybe they would have done the same if their lives had been challenged by some other life-transforming moments, because it would have given the personality a chance to strut its stuff. In that sense, it’s the challenges, not the cancer, that benefited the individuals.

Maybe the more we understand how cancer works, the better we can teach cancer management. We can begin to understand that cancer didn’t just appear over night. It took it’s time setting up shop in the body, hiding out, lurking. When the concrete mind begins to pay attention to new symptoms, when the creative mind begins to believe it’s possible to change the outcome, won’t the mind be better able to direct the body to focus on what’s important at each moment in time, whether it’s taking the difficult cancer treatment that will make a difference or learning to relax and not let the fear fill your head?

A house divided can’t stand. The structure, the foundation, will eventually fall. A cancer patient at war with his creative and concrete minds will be struggling to understand what the immediate picture is and what the future picture can be. What you believe about cancer is every bit as important as the scans, blood tests, and other measures of the disease within the body. If your perception is based on a fantasy, that cancer can be wished away magically, the concrete mind isn’t likely to buy that claim. If it’s based on evidence that what is done can and will have a more positive outcome, the creative mind can begin to look for ways to work with the concrete mind to get the body what it really needs. Does the personality help to determine how that perception plays inside the head?

As cancer treatments have evolved, our understanding of the types of effective medications, radiology, and surgery have also expanded. We know cancer isn’t one disease — there are hundreds of types of cancer. The more we hone how well specific treatments work on specific cancers, the better the outcome. I believe the same is true for the cancer survivor’s mind. The more we understand individual differences in human beings and how their brains process information on cancer, the better we can help and support our loved ones to fully engage according to their ability to perceive the disease. Some people are always going to want to know every little detail, others are not. When we respect our loved ones’ comfort zones and apply our care to fit their real needs, we’re giving them the real support that will help them face this foe.

advanced breast cancer cancer management genentech Herceptin Kadcyla leukemia quality of life

What Matters Most for Advanced Cancer Patients?

Post author By sarambarton
Post date February 23, 2013

Everywhere you look these days, there are stories about new developments in cancer treatments. What was once considered a mysterious terminal disease is today a group of many different diseases that function, spread, and are treated in very different ways.

The promotions for new treatments hail these developments and suggest the first real promise of a cure for cancer is on the horizon. People are surviving longer with cancers that previously would have killed them. The disease is now more effectively managed. But as we see all these advances coming in the near future, we need to remember that life is about living. Quality of life matters.

Leukemia is now potentially curable, thanks to a new treatment that utilizes the body’s immune system, still in the testing phase. That goes beyond previous successes in managing the disease with a once-a-day pill regimen.

A new drug for advanced breast cancer has just been approved by the FDA. Kadcyla, developed by Genentech, combines Herceptin with a toxin that not only has fewer side effects, but kills more cancer cells without damaging healthy cells, giving advanced breast cancer patients an average of six more months of survival over other treatments. It’s almost impossible not to be excited by such news, isn’t it?

As cancer caregivers, one of the most important jobs is to keep informed about the newest treatment advances. Why? Many reasons. You might be able to get your loved one into a trial for a promising new drug. You might just latch onto the best new option that extends your loved one’s life long enough to improve survival, especially now that cancer is a disease that can often be managed over time. Cancer isn’t always a death sentence any more.

But cancer caregivers also have another job, that of making sure that comfort is a built-in part of cancer treatment and management. So often, the promise of a cure is the carrot dangled before cancer patients. “If you get through this hurricane and remain on your feet, the clouds will part and you’ll see sunshine again!” Patients go through hell in the hope of a rainbow after the storm. What if they never see the sun again? What if the clouds don’t part and they die before the winds subside? Our goal as cancer caregivers should always be to give our loved ones the best shot at enjoying those blue skies, even if only for a few weeks.

If you’ve ever sat with a cancer patient in chemotherapy and tried to soothe the discomfort, if you’ve ever rubbed lotion on a loved one with radiation burns and felt the heat on the reddened skin, if you’ve ever had to help a loved one deal with painful scar tissue in the aftermath of cancer surgery, you know that dark side of cancer treatment. Sometimes it can feel like we are in cahoots with some horrible band of torturers, out to make our loved ones miserable. We encourage our loved ones to take it one day at a time. We cajole them into sticking with the actions that we hope can make a difference. We offer them solace that sometimes falls short, leaving us feeling guilty that we’re pushing cancer patients to the edge of agony.

Any good cancer caregiver understands that without quality of life, it doesn’t really matter how long a loved one survives. What good does it do for someone to live an extra three months if those months are spent in the hospital, in bed at home, or in a recliner, unable to partake of life? That’s not living, that’s existing.

I was reminded of this earlier in the week, when a relative died. The family was relieved that the suffering was finally over. They understood that the struggle robbed the patient of what mattered most. In the last few months, the descent towards death was swift and cruel. There was no fairy tale ending. Sometimes, even with the best care, it’s not possible to avoid the pain.

As advocates for our loved ones, we should always focus on making life worth living. When we hear that there is a new drug that actually has fewer side effects than the current treatment regimen, which is the case with Kadcyla, we should consider finding out more about the treatment options. But we should also understand the risks. Kadcyla works because the toxin doesn’t become active until the antibodies to latch onto the tumor. That protects healthy cells from unnecessary damage during treatment. On the surface, it all sounds so good, doesn’t it? This is a new way of fighting advanced breast cancer.

By the same token, there are some serious risks to using Kadcyla, including heart and liver damage. That means that it might not be a good option for someone who has already been knocked for a loop by previous treatments. Some long-time cancer patients often have serious heart issues, due to the side effects of chemotherapy. That may make the drug a huge risk for your loved one, especially if she only gains a few months that keep her from living her life out loud.

For many blood cancer patients, the race for the cure is often tempered by the realities of the disease. Many leukemia patients have been treated with a once-a-day pill and they remain in remission far longer than patients a decade ago. Even as researchers tweak the medications and extend life, they are able to find medicines with fewer side effects. That is definitely a boon to quality of life. All the more reason why cancer caregivers should continue to educate themselves on new treatments that might be appropriate for their loved ones. But we should also understand the price our loved ones will pay for the promise of a little more life. What is it worth to try to stay in the game of life? For some people who have bone marrow transplants, the pain and complications can be an acceptable risk. For others, the hardships are too much of a sacrifice. How do we, as cancer caregivers, learn to recognize when to push for more and when to back off?

One of my biggest inspirations for proactive cancer management was a wonderful woman I met in the chemotherapy room when my mother was being treated at a cancer center. A twenty-year survivor, her cancer had popped up all over her body over those two decades, but she was still alive and kicking. I asked her what her secret was and she shared it. She learned to recognize the symptoms as soon as they occurred. She knew the signs that cancer was growing inside her again, so she would get herself checked out. And every time one cancer center would exhaust its treatment options, she would go shopping for a center that was up on the latest treatments for whatever type of cancer she had. She was motivated to survive. She had a good caregiver in the man she married long ago. But it was always her choice to continue to fight.

And that is my message to all cancer caregivers. As much as we can love, we must recognize that cancer patients are the ones who are taking all the risks, enduring all the hardships of the medications and treatments. At every junction of the cancer management road, we should be asking, “What do you want to do?” We should never think that, as the wind beneath the wings of a loved one, we have the power to propel an advanced cancer patient above the storm clouds. Cancer touches every patient in unique ways, many of which are uncomfortable for the sufferer. Our most important responsibility is to help our loved ones find the best comfort possible, through medications, nutrition, and meeting the physical needs that arise from treatment and side effects. But comfort is more than just physical. It’s about understanding that the mental anguish and the psychological worries can sometimes be more overwhelming than any physical pain.

If we start each day with the idea that we will look for ways to make life more palatable for our loved ones, we temper more of the overall negative effects of cancer and cancer treatment. Advanced cancer patients actually survive longer with palliative care than aggressive treatments that knock the wind out of their sails. That, in combination with newer drugs that have fewer side effects, may make the difference between existing and enjoying the life that’s left. If one day of joy is worth more than gold to you, remind yourself each morning as you rise that cancer management is about living life. Help your loved one take advantage of new treatments that make sense. Don’t fight for the sake of survival. Fight for the joy of blue skies, belly laughs, and beautiful moments that warm the heart. Make life matter.