Author: sarambarton

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advanced breast cancer breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver, Part Two

Part One — “Real Men Don’t Run”

This is a continuation of the February 28, 2013 interview I did with Dr. John Garnand, PhD, who cared for his wife, Susan, over nearly a decade as she faced breast cancer. If you missed Part One, I encourage you to check it out. Dr. Garnand brings a new prospective to caregiving that not only will open your eyes, but your heart.

Sara:

You really drill home the point for cancer caregivers that it’s critical to maintain records, not just to track a loved one’s health, but also to handle the financial issues. When you discuss the economics of cancer management, you point out there can be errors in billing, differences in insurance coverage in terms of out-of-pocket expenses, and even talk about how the loss of a salary during treatment can have a profound effect on the household. How did it help you as Susan’s caregiver to track so much information?

John:
 
First of all this is probably the most basic criticism that people make against our Healthcare System. Its accounting is impossible to understand and interpret. Errors occur. Everything is coded, and errors slip in.(See pp.56-57).  We were billed over a year later for a procedure (birthing) that was not possible for someone who had a hysterectomy.
 
Sara:
 
Yikes! It shows that vigilance is important when handling all the medical expenses. This is especially important for families handling diseases over the long haul, because every dollar counts. I think there’s a tendency for stressed caregivers to just assume all bills are legitimate.

John:

The tracking of information can be tedious, but occasions come up where it is the only way to forestall a real problem.
 
Sara:
 
But you’re not just advocating that caregivers track the financial issues associated with medical bills. You make a good point that caregivers have a very crucial job in helping their loved ones during treatment.
 
John:

Tracking of information is especially critical when the patient is left alone while her caregiver has to leave the home to go to work. It then becomes the patient’s responsibility to take the right meds, at the right times. We went to a family reunion in Illinois. It was a long drive. I had to wake her up to take her Tykerb (5 pills, hour before breakfast), and recorded the dosage consumed. She went back to sleep. She woke up mid morning, and rushed over “to take her meds.” She had forgotten we had already done so. These are chemotherapy medications, and an overdose could create toxic shock, or a fatal reaction. Luckily, I showed her the record.

My wife was consuming 16 different medications a day, at different specified times during the day. If we had not kept physical records I feel very certain we would have had to face a disaster from overdose.
 
Sara:
 
I found that to be true also, John. I had a system to make sure the right medications were given to my mother at the right time and in the right combination.
 
When a patient is taking multiple medications, it gets confusing for patient and caregiver if it’s not tracked. We tend to think we’re being overzealous when we start to record details of caring for our loved ones, but it’s really all about patient safety. Hospitals and health care facilities tend to be meticulous with their medication disbursement, to avoid medication errors.
 
Studies on home care have suggested that one in three patients is vulnerable and the risks increase with the number of medications used. For cancer patients who have “chemo brain” due to the neurological effects of the powerful drugs or who are under mental or emotional duress during treatment, having a caregiver manage the medications is a great support. It’s one less thing to worry about, especially if it’s difficult for the patient to concentrate on details.

 John:

Another aspect of record keeping is every time you go to a physician’s office for any reason; you are expected to fill out the patient’s medical history and medications.
 
Sara:
Having a copy of the current medications is absolutely imperative, especially if patients are seeing many different doctors. It’s important to make sure that everyone is on the same page. I also used to do this for my mother, and I found that adding the over-the-counter medications was important, too, since some of them interfered with the prescribed drugs.

John:

If you can record these ONCE ahead of time, you can run copies and include them with the required paperwork—saving time and frustration. This is the logic behind Exhibits 1a and 1b.
 
Sara:


A lot of men find it a daunting task to be caregivers for the women they love during cancer treatment. I think a lot of them feel powerless to have a positive outcome. Cancer is such a tough opponent. You clearly took on the role as Susan’s champion and tackled some pretty important issues as a spouse. I appreciated what you said when you talked about the importance of finding new ways to express intimacy and that cancer can “get in your face”. You sound like a man with a plan. If you were to coach a team of men who were thrust into the role of caregivers to the women they love, what would your pre-game speech sound like and how would you convince them they can get the job done?

John:
 
Wow, Sara! How on earth am I to answer this question? (A good thing.) You have correctly picked up on the underlying motivation I had when I wrote these parts of the book.

Women tend to have experienced some aspects of nurturing and caregiving in their experiences of managing the family and children. But men are programmed to the world of work, of competition, of fighting or sports. They are repulsed to change a dirty diaper. This has a cross-cultural aspect as well….as I have found out with my work on a Spanish translation of this Caregiver book. I really had the motivation to write this section to almost shame the blockheaded husband into a nurturing role.

I had the crazy idea I could make some headway by example, better than by argument.

Sara:
 
It’s understandable that men might be resistant to the idea of being caregivers for the women they love, but I think you’ve put yourself out there as a great role model. If you think about it, there’s really nothing “girlie” about the role of cancer caregiver. It takes strength and courage. So, John, how would you rally the troops?

John:
 
The pre-game speech would probably be like this—-This is not just her struggle, her fight. She needs her partner now. This requires a team effort, a team commitment. You are now involved in living out your vow to her—-“in sickness and in health” Now is where you live out “…it’s all about her.” Now is your time as well.

Sara:
 
It really is all about commitment, isn’t it? And teamwork. I think men need to know that this is a very noble, decent thing to do. It’s getting into the action, instead of hanging around on the sidelines. What else would you tell them?

John:
 
Now is your call—now is your challenge to live this out. This is the finest hour of your marriage. Now is where you man-up.

Sara:

And what would you say to the women in their lives who need care, who might be reluctant to trust men with the intimate issues of cancer and the tough side effects?

John:
 
I think the answer to this question is bound up in the quality of the marriage relationship. If the guy has always been controlling and estranged from intimacy, the patient may have a hard time with issues of intimacy, or side effects.

Our relationship was very different. I found out quickly that the more independent and free I could make her, and support her decisions, the deeper her love became, the deeper her response—because it was freely given. The “freer” the “deeper.”

Most relationships don’t go this far. In her words, we made a “….mystical, musical, magical life.” A life where we looked upon everything as an adventure, not just a journey together. Laughter, day and night. I guess, I hope that if we can model this kind of living, it would create joy in our world and spread to the community.

Sara:
 
Susan comes alive through the pages of your book, in the ways you describe her, and in the ways you describe your efforts to make her life as comfortable and meaningful as possible. She clearly inspired you to be a better man.
 
John:

When she died, a huge part of me died with her. I tell people, I would have instantly traded places with her if I could. I would have accompanied her to show her the way, but I could not find the Lilly pads on which to step.

I have been thinking about the Caregiver book. It was cathartic to write this book. I hoped we could help other cancer couples became ” …more loving and more proficient” in their care of each other (p.3). Truth is, I had to write this book. There was no noble or generous motivation. I had to alert people to the financial devastation that was staring them in the face, and I had to tell them her story, at least in vignettes. Maybe the next book should be autobiographical “Susan’s Story”.
 
Sara:
 
I’m looking forward to reading that. Obviously the two of you shared a lifetime of learning about each other, and cancer didn’t stop you from continuing to grow as a couple.
 
I think the problem for a lot of cancer caregivers is there is such a learning curve as they move through the process. Not everyone will immediately understand all the issues involved in helping a loved one get through it. Couples will face the disease together with the strengths and weaknesses they share, some more successfully than others.
 
John:

I guess I don’t have a real answer for you.  It depends….on a case-by-case basis. I have the hope that somehow, by the grace of God, the messages in this work will be useful to those who read it. That, in the final analysis, is all I can ask. My prayer for couples experiencing cancer, and traveling the cancer journey together, is for their peace.
 
Sara:
 
I think a lot of couples going through this journey will be heartened by your approach, John. It’s not only inspiring, but also very comforting for loved ones to know that there are steps cancer caregivers can take to provide comfort in many ways, whether it’s making sure that the roof stays over your head, that you’ve taken the right medications in the right dosage, or that there’s still some joy to experience in life. Cancer patients will appreciate your efforts to educate and inform spouses.
 
I also think that caregivers who are stumped on “What now?” will find some positive focus and be able to begin to develop a strategy, not just for the short-term, but also for the long haul, the “Where now?”.
 
You and Susan experienced the ups and downs over the better part of a decade, through the good times and the not-so-good times that cancer management brings. I think your ability to write this book is a testament to that dedication and commitment to each other. I hope you continue to share with cancer families.

Notes on John and his philosophy, provided to me for this interview:

John believes we become what we learn. He believes that no one is fully prepared when the comes to becoming a caregiver to a loved one who has been diagnosed with a major disease. He feels that Caregiving is “on-the-job-learning” which lead him to writing his book, Cancer Caregiver Roles: What You Need to Know. The book is his effort to pull together all the information that he has had to learn over nine years of attending to his cancer patient loved one. It is his hope that this compilation will make it easier for other Cancer Caregivers faced with similar circumstances. John’s loved one taught him everything in life that is important to learn. And he now believe that the acquisition of wisdom is just being open to learning, and that anything good that we have learned will never be completely lost.  In its existential context learning defines our lifetime.
 
Dr. John Garnand’s Cancer Caregiver Roles blog

About the author:

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.

You can find John’s book at these retailers:

Amazon  Softcover $8.99 E-Book $3.99

Barnes & Noble   Softcover $8.99 E-Book $3.47

Kobo Books  E-Book $3.49

Google Books  E-Book $3.03

Balboa Press Bookstore  Softcover $8.99 E-Book $3.99

 
Categories
breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver


Dr. John Garnand, PhD, author of Cancer Caregiver Roles: What You Need to Know, has spent a lifetime as a teacher, at both the high school and college levels. Through the years, John has taught business strategy, management operations, ethics, and public policy to a diverse student population, working to empower people through education. He cared for his wife, Susan, for the better part of a decade as she lived with breast cancer. Their relationship weathered the storm in ways that strengthened their commitment to each other, and after her death, John found his voice as a cancer caregiver educator. He has a lot to share.

 

In many ways, his background actually makes him a perfect candidate for the role of teaching cancer families to care for a loved one. He’s very focused on the financial aspects of cancer management, something I find refreshing. I’ve written before about my belief that we need family caregivers to understand that it’s important to control costs, such as out-of-pocket expenses and insurance benefits, for the long haul. Like any marathon, cancer management is all about pacing yourself so you don’t burn out too soon. You want to be able to maximize what resources, energy, and power you have in reserve, so you can use them to the fullest advantage. This isn’t a race to get to the finish line as quickly as you can. It’s about developing the stamina and the strength to get through a very difficult course as successfully as possible. But John’s book goes a lot further than just sharing insights into what it takes to be a good caregiver. He delves deep into the real difficulties of helping a loved one through all aspects of the disease and its complications.
 

He’s also very focused on doing right by cancer patients. In a field that’s usually dominated by women (given that so many of us are the default family caregivers), I was curious about what a man could bring to the caregiver table. For women who are struggling to figure out the hard realities (especially the money issues) involved in cancer management, John offers strong insight and encouragement. For men who are suddenly thrust in the role of caring for the women in their lives, especially those who have never been called upon to do this kind of thing before, it’s nice to have a peer who isn’t afraid to step up to the plate and hit a home run.
 

My goal over the last three years has been to create a virtual caregiver community, through my Practical Caregiver Guides website and associated blogs, to serve the needs of families, especially those who are managing diseases over time. So often, cancer patients who are treated in the early stages successfully return to active lives. For some, there is a period of remission, with occasional cancer treatments to keep the disease in check. For others, cancer becomes a progressive disease, one that becomes more and more debilitating as it advances. It’s critical to understand that there may come a time when the cancer patient has fought enough. That is not the face of defeat. It is not failure. We should always celebrate and appreciate the real triumphs in life, that we embrace love over bitterness, kindness over darkness, and we make our way down the sunny side of the street. The important thing in cancer management is to provide the cancer patient not only with the best physical care possible, but also with the best comfort, compassion, and companionship. We human beings are complex creatures. We may be made of flesh, but we have spirits that can soar or crash, depending on the air currents. Caregivers should always be the wind beneath the wings of cancer patients. It’s our job to empower them. In that spirit, I offer you the opportunity to meet Dr. Garnand. This is Part One of my interview with him.
 

Sara:
 

One thing I noticed is that you emphasize the importance of caregivers being eyes and ears for the medical team, in terms of reporting new symptoms, difficulties, and side effects. How did you come to embrace this concept and how important is it?
 

John:
 

CRITICAL! The assumption behind this idea is that the more that is known about the patient and the situation (context) in which she experiences her cancer, then the Physician (Oncologist) can make better decisions, more personalized decisions about the patient’s treatments. I believe one can improve patient care by improving patient caregiving (see p.2 of book)
 

But it is more than just treatments. If the oncologist can ascertain what is really going on with and within the patient, (s)he can make better medical judgments about what to prescribe.
 

Look at the example in the book (p.24 bottom). A medical study at Northwestern U. showed that patients tended to be “overly optimistic” about reporting their condition to the oncology team. We experienced this often. She was so tired of new treatments, new regimens that she would tell the oncologist she was doing better than the reality. Your role as Caregiver is to feed her whatever you can to maintain her strength, so she can tolerate the toxic drugs.

 

On one instance: I made her a bowl of oatmeal one morning with raisins and brown sugar. She took two bites, and pushed the cereal away.”It tastes like sand.” I was disappointed; I was trying to build up her strength.

 

Later, when she was asked at the oncologist’s office “how’s your appetite?”, she responded “Great. I had a bowl of oatmeal this morning.” I had to become the snitch…..because the doctor had to know. I will not forget the look she gave me.

 

Sara:

 

I’ve been in those shoes, John. It’s never easy to be forced to choose between that sense of loyalty and doing what’s best for your loved one. I found in my own case that I was often “toast” for a while, and eventually forgiven because the doctors were able to use the information to make my mother more comfortable. She came to appreciate the advantage. It’s part of the trust quotient in the caregiver relationship.

 

John:

 

Another example; end of life. The physician at the Hospital asked her “Do you want a pain pill?” She nodded in response. But I noticed she was touching her cheek. I had been her constant companion for the last five years, and I was able to differentiate between when she was feeling “pain” and when she was feeling “anxiety.” The treatment for pain (Oxycodone) is very different from the treatment for anxiety (Adivan – sedative). I went out in the hall and told the physician that what she was expressing was anxiety, not pain. I will not forget his look—like “who do you think you are!” The immediate response that welled up in my head was “Doctor, forty-one years trumps 15 minutes.” but I bit my lip. She did get the Adivan, and was peacefully content after the episode.

 

Sara:

 

That’s an interesting point, John, about the powers of observation and insight that a long-time caregiver often develops. I’ve heard the same thing from many others. We start to notice the subtle differences in how care is tolerated and what our loved ones are really saying to us because we learn to read between the lines.

 

John:

 

Also, if the Oncology Team perceives you have been doing your homework and understand the situation, I perceived they worked a little harder professionally. I think we got past a lot of fluff because of this perception.

 

I have heard it said, “When one of you gets cancer, both of you get cancer.”

 

Sara:

 

I know that you’re a long-time educator at the high school and university levels. You’ve also been a debate coach and a tennis coach. How did you utilize that experience in your role as a caregiver for Susan, as she struggled with breast cancer, and later, when the cancer spread?
 

John:
 

This is a hard question to respond to. When one finds out the diagnosis–“You have cancer”—everything changes. You enter a foreign world. The language is not familiar; customs and protocols are not familiar….I liken the experience to being expatriated to a foreign country (see p. 9).
 

I have tried to draw straight causal lines between who we were and who we needed to become. I came up with descriptions like the following. We were both teachers. Teaching has its own rhythms and disciplines. You learn to plan ahead, you think sequentially, you try to understand the material in a way that you can explain it in the Receivers’ terms, you work to anticipate questions, and you learn to respect deadlines and schedules. But somehow, none of this really applies to the magnitude of the diagnosis. All this is academic. After the diagnosis, you are grappling with living in a new chaos. Plans have to be suspended. And, there is always the growing Primal Fear. You quickly learn the difference between mouthing your beliefs, and experiencing them…..between talking about it, and living it. It is similar to the issue of death. We all know it will come. We can talk about it from the pulpit or among friends…..but when it is there, in front of you, you feel inadequate and confused.

 

Sara:

 

I think that families do grapple with the chaos of cancer. It just seems to create a semi-permanent state of dread and uncertainty. You can’t seem to move forward until your loved one starts passing those all-too-critical milestones, but then the worry is still there in the back of your mind that it can come back and disrupt life all over again.

 

John:

 

I am of the opinion that NOTHING fully prepares you for this experience. There must be some transference of your knowledge, skills, and experiences at a subconscious or subliminal level. But I really cannot tell you our backgrounds prepared us to deal with cancer.

 

Sara:

 

If you could sit down with a group of “newbie” caregivers on the first day of their loved ones’ cancer treatment, what pearls of wisdom would you share to help them start off on the right foot?

 

John:

 

Learn as much as you can about what will be going on and “cancer,” as quickly as you can. Set up your best sources as “Favorites” so you can go back to them later. Try to find/create lists of Resources.

 

Review your medical insurance. Somewhere around 75% of all bankruptcies in America are medically induced. People are losing their life’s savings, their investments, and their homes because they did not understand or respect the coming medical quicksand. Look at the costs of the most commonly prescribed cancer drugs (p.44). We were on the daily hormone therapy Tykerb—$4,737.per month. She underwent one chemotherapy treatment each of the last four years—$35,000.

 

You have already received treatments totaling $100,000 and we have not counted any doctor visits, office visits, lab draws, diagnostic imaging….etc. Conventional insurance, including Medicare, is 80 : 20 insurance; the insurer pays 80% and the patient pays 20%. In the last years of her life, we spent close to $200,000 per year. 20% of that is $40,000. PER YEAR! Whom do you know who can come up with these levels of funds….annually??? If she had needed a stem cell transplant, add $150,000 to the bill. Brain surgery? Another $150K…

 

Conventional insurance will consume your resources like a forest fire…..Unstoppable.

The answer lies in insurance with plans that offer an “OUT-OF-POCKET-MAXIMUM.” Once you hit the OPM, the insurance carrier pays 100%–full costs .Do the math. (Check pp.44)

 

Sara:

 

It’s almost mind-numbing to think about all that in addition to having to care for a loved one with cancer. In many ways, it just adds to the stress when to have to juggle the financial details. And yet, if you don’t, you wind up even more overwhelmed. It sounds like cancer families should start planning as soon as possible, to avoid as many pitfalls as they can. What else would you recommend?

 

John:

 

Focus on LIFE. Find ways to build in LAUGHTER (pp.73-76). Find ways to break through the overwhelming myopia that cancer brings. Cancer gets in your FACE (p70). Become creative in your relationship with your loved one. Find ways to play, to laugh, to enjoy…. Laughter drives out cancer, at least for the moment. Enjoy life. Engage in Life. Don’t live cancer; live life (that just happens to include a distraction called cancer).
 
End of Part One —

Part Two of “Real Men Don’t Run”

 

About the author:

 

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.
 

About the book:

 
Cancer Caregiver Roles: What You Need to Know is available in print and in digital e-book form:

Amazon Softcover $8.99 E-Book $3.99
Barnes & Noble Softcover $8.99 E-Book $3.47
Kobo Books E-Book $3.49
Google Books E-Book $3.03
Balboa Press Bookstore Softcover $8.99 E-Book $3.99

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

What Matters Most for Advanced Cancer Patients?

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.

Categories
cancer caregiver cancer families caregiver education Stowe Stowe Weekend of Hope Vermont

Cancer Families, Another Stowe Weekend of Hope Is Coming Up!

It’s coming up on the horizon. Once again, it’s almost time to sign up for the Stowe Weekend of Hope. This year, it’s May 3-5. Sign-up begins March 1.

In case you’re unfamiliar with this event, the people of Stowe, Vermont put on a weekend in May for cancer patients and their families. The accommodations are free for first-time cancer attendees. There are discounted accommodations for those who return and for family members.

Throughout the weekend, there are a variety of activities, from recreational to spiritual to educational. It’s a chance to get together with other cancer families and share inspiration, lessons learned, and to meet with medical professionals who are striving to improve the lives of cancer patients through new medicines and treatments.

No two cancer patients  or two cancer caregivers will ever face the disease in the same way. As human beings, we all have different beliefs and different experiences. Sometimes it’s really nice to expand our horizons and take a look at the disease with fresh eyes.

Vermont is a lovely place to visit any time of the year, and the fact that the people of Stowe are so welcoming to cancer families makes it all the more wonderful a place to be in May. If you are a cancer caregiver or cancer patient, and you just want to have the chance to rub elbows with others like you in a beautiful setting, consider taking advantage of this offer.

For more information, follow this link:

The 13th Annual Stowe Weekend of Hope

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cancer book cancer management Suzanne Whang Suzanne Whang on Twitter

What Suzanne Whang Wants You to Know

It’s heartening to know when someone who has struggled with cancer treatment makes it through and comes out on the other side. I wrote about Suzanne Whang’s struggle with cancer in previous posts. Most people know her from her stint as a host of HGTV’s “House Hunters”, but she’s also an actress and comedian. She brings something unique to the cancer table, not just because she’s a comedian with a wild streak, but because she actually has a BA in psychology from Yale and a Masters in Cognitive Psychology from Brown.

Imagine my surprise when I found a message from her this morning in my inbox, responding to an old query. One of my readers wondered how she was doing and wanted me to find out. And today, I did.

Ms. Whang reports she’s cancer-free. Wow, that’s fantastic. No matter how many times I hear that kind of news, I never get tired of it. One more person who made it through the dark night to the new morning. One more person to continue to share her unique talents with the world. How lovely.

Better still, she says she’s writing a book about her experiences. You just know it’s going to a positive impact for cancer patients and their families. I’m looking forward to getting her take on all the ups and downs of cancer treatment.

She would like you to know that she has too many Facebook friends, but if you’d like to follow her, you can on her Twitter page — @suzannewhang. You can also email her at gookwaffle@gmail.com

(I’m guessing from her email address that she’s still thumbing her nose at political correctness and social etiquette. Not a girl to invite to the cotillion. No, she’s too much fun for that. She’d be out back, doing her impressions of the debutantes. Fine by me. I’d be right there in the audience, laughing my &%$#*!>{ @^^ off….)

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cancer caregiver cancer perception cancer treatment Lilly Oncology Initiative PACE study

What Does the PACE Study Tell Us About Cancer?

In an earlier posting, I gave a pop quiz on the results of the PACE study, an effort to determine how people feel about cancer and cancer treatment in Germany, Italy, France, the UK, Japan, and the US. You can find the information on the study here:

The PACE Cancer Perception Study

Having given you a chance to see for yourself whether or not you have a true understanding of public perception about cancer, let’s consider the implications for cancer families.

What’s the most interesting thing about the findings? The majority of people surveyed for the study believe it takes too long for new cancer medicines to reach patients and they think more money should be spent on cancer research and cancer treatment. That speaks to the frustrations of many who feel that promise of improvement is so close, putting those cancer treatments in the hands of those who most need them can make a difference. If we weren’t seeing real results hovering over the horizon, would we be so hopeful? Twenty years ago, so many people perished because the treatments for cancer were far less successful and sometimes the treatment was even harsher on the body and spirit than the disease itself. Now we can feel it coming, that next great discovery, and we want to be a part of it. We want to catch that wave and ride it all the way to a cure.

Which country had the most people with an optimistic view of cancer management? The United States. Sixty-five percent of those asked said they didn’t view cancer as always having a fatal outcome. Why is that? Is it the fact that we have some amazing cancer centers that are constantly updating their cancer programs, keeping current with the latest developments? Is it that this particular group of Americans had more experience and knowledge of cancer survival? Hard to say. Maybe Americans are just normally more optimistic than people in other countries. That’s a question that might be answered by a follow-up study.

What is cancer? It’s not one disease, but rather a series of more than 200 diseases, which can have their origins in biologic, genetic, or environmental causes. Why is it important to know that? Not all cancers are the same. They won’t respond to the same treatments the same way. They won’t respond to the same medicines. Every time a patient is diagnosed with cancer, it’s imperative that the type of cancer and as much information on viable options is determined by the medical team. With so many different kinds of cancer, there’s no way cancer treatment is “one size fits all”.

At the moment, a mere 5% of cancer patients are enrolled in clinical trials. And yet, 70% of the PACE study respondents were interested in those trials. Why? Clinical trials offer that extra chance of survival. If there’s a new medicine that offers a better survival rate, wouldn’t any sane human being want to try it? What’s stopping them? The survey only dealt with the perceptions about cancer, so we still don’t know. Is it lack of opportunity? Are cancer centers reluctant to abandon drugs with known results, even if the results are less than satisfactory, in place of experimental treatments? I don’t have the answer to that.

Six out of ten people asked reported their belief that pharmaceutical companies are focused on treating cancer, rather than curing it. Why does the public believe that pharmaceutical companies are less interested in putting investment dollars into a cure? Part of that is that perception of how cancer treatment is handled. It’s a communications issue, a failure to explain how things happen in research. But don’t forget that with more than 200 different diseases that are lumped together as cancer, it’s easy to lose sight of the progress. For every step forward, it can feel like it’s taking too long to catch up. If cancer were a single disease, we would probably be far more confident in the efforts to battle it, because we’d be better able to assess the progress. But with so many different types of cancer, those little baby steps don’t seem to add up as quickly.

As for satisfaction in the war on cancer, six out of ten people expressed their approval on efforts to fight the disease. Is that just because six out of ten are normally optimistic people, or do they have a reason to hope? Do they know something the rest of the population doesn’t? In the survey, a group of cancer patients and cancer caregivers were interviewed, along with a larger group from the general population. The cancer patients and cancer caregivers made up a little more than one quarter of the whole group, and yet six out of ten people reported approval. Did the remainder of the people who answered positively have more experience with cancer than those who did not? Again, it’s a question for another study.

Why were Japanese participants in the survey less worried about the impact of the economic factors on the treatment of cancer? Was it because their economy hasn’t required cutbacks in spending for cancer treatment? Are the other five countries struggling more to fund health programs? Is cancer treatment in Japan well-funded? Are there lower cancer rates for the Japanese? Again, more questions that will have to be answered in a future study.

The French participants in the PACE survey reported the most satisfaction with the amount of money spent on cancer research in their country. Is that because of the actual amount of money put towards research, or is it the perception that the country is moving forward with the research? Is it the result of good public relations or good research? Yet another question that needs further study.

Is it surprising that nine people out of ten would be willing to share their medical records in order to help researchers and oncologists? That speaks to the heart of the perceptions of cancer patients, their families, and the general population. We understand that the more information our researchers and doctors have, the better the chances to survive the disease. We’re willing to cooperate to make that happen. Some people expressed concern that the data might be misused. That’s understandable, given the current climate of data collection. There are marketers and other entities that misuse the information for their own gain. Would it be misused by cancer researchers and doctors? Hard to say, but it speaks to the public’s need for strict guidelines to protect privacy.

PACE stand for Patient Access to Cancer care Excellence, and the PACE network is made up of a vast group of professionals involved in all aspects of cancer research, treatment and policy. The goal is to improve how we fight cancer globally. Will it work? Only time will tell. The more success we see in cancer treatment, the more our confidence will grow. And some of that confidence will come from the public outreach that makes us all aware of new medicines and treatments. The more we know, the more proactive we will be in fighting cancer. We will take advantage of the opportunities afforded us. That’s really the best chance to survive the disease, and surviving it brings each of us that much closer to a cure.

Categories
cancer caregiver cancer perception cancer treatment Lilly Oncology Initiative PACE study

Take the Cancer Quiz on World Cancer Day

One of the things that often happens to me as a cancer blogger is that companies approach me about their latest offerings. My goal is to help cancer caregivers find ways to utilize education and information to help a loved one manage the disease.

Towards that end, I was approached by a representative of Lilly Oncology Initiative, as part of a public awareness campaign of cancer, cancer treatment, and what it all means in the bigger scheme of things. Called the PACE Study,  the conducted survey queried people in six countries (Germany, Italy, France the UK, Japan, and the US) to find out what the public believes about cancer, new oncology treatments, and the future for cancer patients. I want to share with you some of the highlights of that study in the form of a pop quiz, so put on your thinking cap and see what you really know about cancer perception around the globe:

1. When facing cancer, the country with the highest percentage of people who believe they can be helped by treatment is:
A. The UK
B. Japan
C. Germany
D. The US

2. Cancer is:
A. A single disease that can grow anywhere in the body and spread to other parts.
B. Ten types of malignant cells that can appear in specific organs and grow.
C. A contagious disease that is spread through poor sanitation and risky behavior.
D. A group of more than 200 diseases which are of biologic, genetic, and environmental origin.

3. Typically, only five percent of cancer patients participate in clinical drug trials. What is the percentage of people in the PACE study who think cancer patients should have greater access to these trials?
A. 70%
B. 52%
C. 21%
D. 8%

4. In the survey, 6 out of 10 have the perception that the goal of pharmaceutical companies is to:
A. cure cancer
B. treat cancer
C. medicate cancer patients
D. only develop drugs that are popular

5. How many people surveyed expressed satisfaction with the progress of cancer treatment over the last 20 years?
A. 82%
B. 60%
C. 47%
D. 35%

6. Which of the six countries surveyed had the fewest respondents concerned with current economic factors slowing down cancer research?
A. The US
B. The UK
C. Japan
D. Italy

7. Which country had the most survey respondents who were satisfied with the amount of money its country spent on cancer research?
A. Japan
B. France
C. The US
D. The UK

8. How many people surveyed would be willing to share their medical records in order to improve cancer research and treatment?
A. 90%
B. 65%
C. 42%
D. 18%

9. PACE stands for:
A. Pharmaceutical Action Committee Executives
B. Patients’ Act for Cancer Education
C. Patient Access to Cancer care Excellence
D. Pharmaceutical Association Cancer Education

10. PACE is:
A. a group of the top ten pharmaceutical companies working to develop medications for cancer patients
B. a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
C. a group of international oncologists, cancer support groups, and lobbyists seeking to improve access to cancer treatment
D. an organization of cancer advocates who want more research

THE ANSWERS ARE:

1. D. The US — 65% don’t feel that cancer is necessarily a death sentence any more. Many cancers are now better managed as a chronic disease, and some are even curable.

2. D. Cancer is a range of diseases that can be caused by a number of different kinds of factors.

3. A. 70% believe these trials should be more accessible.

4. B. Pharmaceutical companies are now working to educate the public on their research and development programs to find cures for the different types of cancer.

5. B. Six out of ten people surveyed expressed satisfaction with progress in fighting cancer.

6. C. Japan

7. B. France

8. A. Nine out of ten would be willing to share their medical records in an effort to improve cancer research and treatment, although some people expressed concern about how the data would be used.

9. C. Patient Access to Cancer care Excellence

10. B. The PACE network has a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.

Did you get all the answers correct? Perception is a very important issue in the fight against cancer. The more you know, the better able you will be to access information that can help you and your loved one manage this disease, the treatment for it, survive it, and thrive with it.

If you would like to know more about the PACE study, you can follow this link:

PACE Study on Cancer Perception

Categories
cancer caregiver caregiver education caregiver support

“Who ARE You?”

I had a very busy week. I’m in the process of updating website and blogs, streamlining material so that it makes more sense, and at the same time, editing some caregiver videos. In the midst of all this, I got a flurry of emails from a young woman who decided to question my credentials as a caregiver blogger.

There I was, up to my eyeballs in work, and she wanted to know why I didn’t have an “about” section on my cancer blog. The nerve! How dare I not provide information on my background!

Actually, I did. It was buried down at the bottom of the blog because over time I had loaded so much information onto the website, it got shoved to the bottom of the pile. Part of why I was weeding and culling this week.

After she pointed out the fact that she STILL didn’t know ABOUT me in subsequent emails, I realized what she was looking for wasn’t my credentials. It was my pedigree. Was I even remotely her equal? She didn’t seem to think so. She seemed to think I was some interloper who just dropped off the banana boat after smuggling myself into the country. And that brings me to explain what REAL credentials are, especially when it comes to caregiving.

I actually have a degree in education from a respectable university. I actually graduated with honors, with a major in education and minors in psychology and art. I actually did graduate work in psychology, information science, and media. And yes, I should have gotten the masters degree. Lord knows I have the credits at the three universities where I studied at the graduate level. But to me, what I was getting out of those classes was more important than the piece of paper. I was busy painting and writing. Maybe that’s why I wasn’t terribly concerned about answering the demand for information on my pedigree.

The truth is I am at heart an educator with a passion for learning. How does the brain compartmentalize and comprehend information? How do you make the connections between a terrible disease and the promise that there are ways to thrive while managing cancer? That’s what a good teacher is supposed to do, help students move from Point A to Point B to Point C, building on lessons that strengthen a student’s own skills.

As an educator, I know people have different ways of absorbing information. Intuitive thinkers are very different from concrete thinkers. Some people are emotionally based, others are not. How you present information matters. Propagandists know this. Political spin doctors know this. Linguists can tell you that it’s a mental process that can be manipulated. But I can tell you, as someone who has witnessed cancer’s devastating effects, that perception is everything when it comes to cancer treatment. What is the brain telling you about cancer? More importantly, how do I share information with you that helps to alleviate some of the fear and move you in a more positive, productive, and successful direction? There’s a reason we want to keep hope alive. Hope feeds the soul.

I did my first teaching practicum in a prestigious city hospital, in the pediatrics department. I loved working with hospitalized children because it was a great challenge. I was lucky enough to have professors who believed that if a child failed in school, it was really my failure to reach into that child and tap his or her strengths to build up the weaknesses. That’s a “whole person” philosophy. It put the responsibility on me to connect with each and every child and bring out the best in him or her. That’s how you build the human bridge, especially in health care.

Back then, cancer deaths were more prevalent, especially with childhood leukemia. I worked with a range of children with different types of cancers, but I also worked with children who had other medical issues. Why is that important? When you’re trying to figure out ways to help cancer families, it helps to know what is normal behavior and what is abnormal behavior. Hospitalized children can go through a myriad of emotions, and the causes and triggers can be complex. Knowing how children think and feel in the stages they pass through can be critical in knowing how to connect with them with what ails them. There’s a difference between a four-year-old’s nightmares and a ten-year-old’s nightmares.

I also worked in a psychiatric admissions hospital, with adults who were unmedicated. If you’ve ever seen someone out of control, you know it can be scary. Again, I got to see a wide range of behaviors in adults, ranging from a sweet, gentle man who battled depression to the non-communicative man who murdered his mother during a fit. I learned that how you approach a patient can make a huge difference, and that by paying attention to visual and verbal clues, it’s possible to avoid an unnecessary confrontation and get past the wall, so that the real issue can be addressed. Being able to think on your feet is a very important skill. It came in handy on more than one occasion, especially the night I had to talk a woman out of committing suicide. That’s a life-and-death situation that forces you to reach deep into another soul and say, “Your life has value. This pain you feel right here, right now, will pass. You have so many reasons to live past this moment in time. Look beyond it and see all the good things you have to get you through this terrible experience.” Sometimes people in crisis are so aware of their pain, that’s all they can see. It looms above them like a big, black monster and intimidates them. All that self-doubt, that self-hatred is really an inability of the person to see the big picture. None of us is ever perfect. We don’t live perfect lives. We don’t do perfect things. But almost everyone of us has skills and strengths. When we lose sight of ourselves as a whole, we can become too focused on one aspect of our lives, and that skews the balance, forcing us into despair. Cancer can do that to the best of us, the strongest of us.

I also worked with juvenile delinquents, some of whom just had poor impulse control and others who were actually menaces to society. There’s a difference between a kid who can’t stop himself from reacting and a kid who spends hours engaged in fantasies about doing heinous things to people. It was a good lesson in understanding that it’s more than environment that makes a kid go bad. When we allow kids to do their own thing, it’s often a recipe for disaster if they’re drawn to darkness. How do you point someone in a more positive, more productive direction, away from things that cause harm and onto things that makes us better people?

Over the years, I’ve been there for people who have experienced physical trauma and emotional anguish. Whether they were victims of crime or victims of fate, it didn’t really matter. The process was the same. How do I help you to get back to being who you are, but as a better, stronger you? I took those lessons into the caregiver equation. Caregiving isn’t about making someone dependent on you. It isn’t about focusing on what a person can’t do alone. It’s about finding ways to compensate for what’s not there, in order to make the person feel as whole as possible.

The damage from a traumatic event doesn’t go away overnight. There is no magic wand to whisk away the pain. Many cancer patients are victims of trauma, through the battery of cancer treatments, be it radiation, surgery, and/or chemotherapy. So many times, the side effects are tougher than the actual disease. Helping someone overcome the debilitating effects of that trauma is sometimes the biggest battle of all, because we humans are, by nature, emotional creatures. We feel. But we also think. Combining logic, comfort, and compassion is a vital part of helping someone face the aftermath of trauma, but understanding how that trauma has changed someone’s life is the real key. Trauma, facing it as a victim of a horrible crime or a horrible disease, has the same result if it’s allowed to take its course unchecked. It will stop a person in mid-step. It will steal the confidence, the courage, and even the character from a person. That’s why it’s so important to empower cancer patients, not with mythic belief that they can overcome their disease, but with the real belief that this disease can be managed. It’s all about quality of life.

I’ve had my own experiences in overcoming obstacles. Many years ago, my car was sent into a telephone pole by a distraught young woman who had just broken up with her boyfriend. It took a year of physical therapy for me to get back to a life without constant pain. Just as I was finished with all that hard work, I was a passenger in another car that was rear-ended. It was back to physical therapy all over again. That experience gave me a glimpse of the frustration that comes from finding out that your cancer is no longer in remission and you’re back to square one. It’s maddening to do all that hard work for what appears to be naught.

Mental health is as much a component of cancer care as is the actual physical treatment of the disease. You can throw the best medicine at a tumor, but if the patient’s perception is that it’s a waste of time, it’s not likely the patient will thrive over time. Why? It’s all about the terror of having cancer. That eats away at you. It stops you from taking positive action.

Art has always been my first love. How does this fit into being a cancer caregiver educator? As an artist, I studied perspective. From the age of nine, I practiced, practiced, practiced. A lot of people think that artists are flakes (“Who ARE you?”), but the truth is that most artists throughout history, with the exception of the last few generations, approached art with much more respect for science and mathematics. There was an understanding that perspective made all the difference in what information the eye took in. If you take an apple and you place it on a table, that is only one view. Every time you take a step to the right or the left, the apple will change. Why? There will be more or less light. There will be a different background as you move around the room. How does that fit in with cancer care? The more complete your understanding of the cancer picture, the better able you are to find tools to assist you in battling the disease or helping someone you love to battle it. Sometimes people get caught up in the darkness. They see only the despair of having cancer. It has tremendous power to make even the toughest human being feel small and helpless. But that’s because we sometimes forget to look for the light. Cancer isn’t a disease that happens overnight. No one ever has a tumor that just pops into place. Cancer is a disease that evolves over time. Understanding that and putting the disease into perspective can help tamp down that terror for someone battling the disease. Rome wasn’t built in a day, so it will take more than a day to tear it down and rebuild. Cancer isn’t a sprinting event. It’s a marathon.

So, who am I? I am someone who started out with a belief, as that young college student, that I would somehow, some way, take what I learned as an educator and make sense of it for the everyday person. That’s what I was in the middle of doing this week when the young woman repeatedly asked me “Who ARE you?” I believe that I have the tools, the skills, the experience, and the wisdom to make a difference in the lives of family caregivers, no matter what the issue that creates the need in a loved one to have that support. I know the value of teamwork, of attitude, of compassion, and comfort, but also in drawing out the strengths of a person who doubts and shoring up those weaknesses.

I know that uncertainty and dread are greater threats to a cancer patient than any tumor. It’s not about running away from the terror that gives quality of life to someone with the disease. It’s about putting the focus on the positives. It’s the equivalent of turning on a light when a child believes there is a monster under the bed. Cancer patients can feel like that sometimes, can’t they? There’s so much about cancer we still don’t know, still don’t see, still don’t understand, and that monster is lurking in the dark recesses of our minds, whether we are the patient or the caregiver. That’s why it’s so critical to know what else is in that room. Cancer patients who feel alone will often give themselves up to that terror. Cancer patients with a support team of family, friends, and good health care providers will survive longer and better. Why? Because they can avoid some of the stress that comes from having a serious disease like cancer.

In the end, stress is one of the most destructive components of any disease, and stress management is critical for cancer patients and for caregivers. Stress affects the heart, the nervous system, and even your mindset. It will kill you faster than any disease, because it robs you of the ability to enjoy your life. And what is life if you’re miserable? My goal, as a caregiver educator, is to inspire other caregivers to find what works for them and for their loved ones, to build on their skills, to expand their understanding of patient psychology, to treat the whole person and the whole life. We are always bigger than any disease, any trauma, any obstacle. We don’t always see that. We sometimes forget it and lose our way. Our lives are often changed by one tiny moment in time, when something terrible happens and we surrender to our fear. Rebuilding our lives takes time, energy, and focus. It takes support from those who love us and care for us. By making the effort to treat the whole person, we can overcome the disastrous parts of our lives and get back to being who we are, living the lives we were meant to live before terrible things happened to us.

You might think that the young woman who asked, “Who ARE you?” earned my scorn, but she actually did me a huge favor in questioning my pedigree. These are my credentials. This is who I am. This is what I believe. This is my experience. These are my skills. My work speaks volumes about what I know about life. I didn’t become the person I am by hiding behind my pedigree. I am who I am because I took the time to use my education, my passion, and my desire to expand my understanding of how we humans are impacted by disease and disaster. It’s okay if she doesn’t think me worthy. What matters is that out there, every once in a while, another caregiver catches on and takes what I offer, makes it work, and improves the life of a loved one. To me, that’s the best validation for what I do.

Categories
Amanda McGovern cancer cancer management cancer recovery cancer treatment recreation Seas IT Todd McGovern

Todd McGovern’s Legacy — Seas IT

Todd McGovern died at home on January 29, 2013. I read the obituary in the New York Times and found the story very inspirational. I want to share it with you because I think it will encourage you and your loved one to be as involved in life as he was as he battled cancer. He outlasted his diagnosis by several years. He fought the good fight, as so many cancer patients do. But what he left behind, what goes on in his absence, is his legacy.

Todd was just thirty, married for all of two months, when he received his terminal cancer diagnosis. Imagine that blow. Here you are, starting out your new life with your new wife. The world is your oyster. You have just about all of your adult life ahead of you. You imagine growing old with the woman you love. You’re planning your future together. And then this has to happen.

Todd didn’t take it lying down. He fought back. He made decisions about what he, not the cancer, was going to do for him. I have little doubt that it was not an easy struggle. Anyone who’s been around a cancer treatment center knows what a tough foe cancer can be.

But this young man, still so full of promise, was determined to impact the trajectory of his life. He was not willing to surrender himself to the despair of the disease. Todd wanted to live life to the fullest.

Sometimes ordinary people become extraordinary through circumstances not of their own making. They reach deep inside and they pull out that rabbit from life’s hat. Todd was such a young man.

But Todd had a partner, a supporter like no other. Amanda was surely a big part of that whole enterprise. She started Seas IT, a cancer recreation program to help them stay focused and positive throughout Todd’s cancer treatment and management. She understood the beauty of the great outdoors, with all of its restorative energy. She understood that being involved and passionate about your life was a key to living, not just existing.

I get that. When I was pushed to the edge as a caregiver, especially during my mother’s declining days, hiking was my one real pleasure. Every time I discovered a new trail, I was reconnecting to life. Every time I took a break from my mother’s cancer, I was renewing my spirit in the sights, the sounds, and the pleasures of nature. I would come home and face my caregiver duties with a determination to start fresh. I left the house weighed down by my responsibilities and I returned refreshed. That’s what recreation is all about, whether it’s running a marathon, enjoying a play, or visiting a museum.

I recall lugging my mother’s medical equipment through more than one art exhibit, pushing her wheelchair. Nothing made her feel more human again that visiting an art museum. We made our way through the centuries in three very different bastions of art history. And every time we returned home, my mother was satisfied that her disease had not gotten the better of her. It had not kept her from the things she loved most.

Recreation is that respite time we save for ourselves, for our wounded spirits and our challenged bodies. It’s that time we throw ourselves into what makes us most happy because it helps us to be true to our souls. For some, it’s running. For others, it’s fishing, knitting, or maybe even finally getting around to taking those piano lessons you always wanted to have, but never got around to doing. Recreation is all about you, not your disease. It’s about working on your putt instead of fretting how long your bone cancer will take to kill you. It’s about throwing that clay onto your potter’s wheel and creating a masterpiece.

It’s about doing, not just dreaming. It’s about getting off that recliner and getting back out into the world, where you belong. It’s about shutting off that little voice in your head that says you should just raise the white flag and be done with it. It’s about shaking off the terror of having cancer and living your best life inspite of it. Todd had cancer, but Todd also had life and a woman who loved him. That’s a very powerful force that creates positive energy, that extends life even against the odds.

So often cancer patients find their lives limited by the rigors of treatment. They spend their lives going back and forth to the hospital, getting scanned, getting chemo and/or radiation. That’s really when a lot of people begin to give up. If all you see is your bed and your doctor, the message you receive is that life as you knew it is over.

Todd and Amanda McGovern saw past that limitation. They knew they needed more. They knew other cancer patients needed more. Seas IT is all about staying as active as is possible during cancer management. It’s about using recreation to keep spirits up, to keep hearts open, to keep hope alive.

Todd lived long enough to see his twin sons born last June. He lived long enough to pass along his passion for recreation to those cancer patients who walk in his footsteps, who come up behind him. He lived long enough to share with us a very important secret for cancer patients. The more normal your life is with cancer, the better you will survive it.

Why is this important? Any cancer patient can tell you that in each new day that dawns, the promise of a cure hides within the heart. That promise wasn’t there unendingly for Todd. His life ended too soon when his time ran out. But because he and Amanda shared their secret about the pleasures and the power of recreation, they may have saved countless other lives, not by Todd’s dying, but by his way of living. In surviving so long with his terminal cancer, Todd showed us that the individual has some personal power to overcome even the toughest of foes. Couple that with new cancer research and new medicines, and that is how a cure is discovered. One small step at a time will lead us to the end of this insidious disease.

Even as his small sons begin to find their way in this world, their father’s legacy will live on. As they grow, as they thrive, let them be inspired by a man who wasn’t willing or able to surrender to his cancer. He rose above it and was made better by it. He became an inspiration and a teacher, whose lessons live on now in Seas IT.

If you would like to know more about the organization Amanda and Todd McGovern created, follow this link:

Seas IT
 
 
Categories
cancer cancer humor cancer management cancer survivor laughter Suzanne Whang

Suzanne Whang — Still Feisty and Funny

Some time ago, when I wrote about her disappearance from House Hunters, a reader asked me what Suzanne Whang’s status was. This long-time cancer survivor with a few impressive psychology credentials to her name was still struggling to beat back the big beast. These days? Suzanne Whang is busy tweeting and posting. That’s good news for fans.

If you’re looking to find her and follow her on Twitter, her user name is @suzannewhang. Fair warning — this lady is NOT for burning. She’s not demure or dainty. She could easily beat back the toughest sailor on the waterfront with her salty language (Hey — cancer survivors HAVE to be tough!)

If you want to find her and follow her on Facebook, she’s Suzanne Whang:
Suzanne Whang on Facebook

Why do cancer survivors and those just starting out need to hear from her?  Because it takes real courage to fight a disease like this, and attitude is everything. Suzanne is NOT one to hold back on that front. That’s okay. Maybe, if nothing else, hearing it from her will spike your interest in not surrendering to this monster under the bed. You won’t be as afraid to confront the elephant in the room. And if you like to live vicariously, she’ll be happy to say all those incredibly rude, outrageous things you’ve been thinking. She might even get you to laugh. And laughter is always the best medicine for whatever ails you. There are real physical benefits from a belly laugh — you breathe better, your blood flows better, your mental health improves. But it’s what a good belly laugh does for the human spirit that counts the most. Rise above cancer, even just for a moment, and you are no longer in its grip. Set that disease aside and you get to live your life again because you choose to laugh, instead of cry. Take back the “remote control” on your life and fill it with mirth. You may not control the events you experience, but you sure control the replay action. Never forget that.

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Take a break and read a free ebook, just for fun. Get a copy for free (Amazon and Barnes & Noble charge a 99-cent fee, but you can get it at Smashwords in all popular formats — sign up with a free account):

 
 
Amazon — Henry Hartman’s Holiday Crisis
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