Every few months friends or family will ask for suggestions on how to support someone with young kids whose whose spouse has been diagnosed with cancer. It's unnerving the number of young families dealing with a parent newly diagnosed with the disease. Recently, a cousin … Read More... about Supporting a friend whose spouse has cancer
Balanced Living with Cancer
One young family’s quest to find balance while living with cancer
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This summer my kids and I visited Yellowstone and the Grand Teton National Parks. My husband could not join us because of daily medical treatments. The area holds special meaning for the five of us – a unique distinction – the destination of our last carefree family vacation, August 2007. It was a road trip to Wyoming to visit both national parks. At the time our kids were ages 5, 9 and 11 – Box Car Children books on tape saturated the car radio. Two weeks after we returned, my husband developed shingles on his face and it was then we received the news his lymphoma had returned with a vengeance.
It was not an easy choice deciding to take the kids without him this time, and one I have since received criticism for making. He is going on his 737th consecutive day of IV treatments for an infection he developed over two years ago, the result of a suppressed immune system. What many fail to appreciate is children continue to grow up despite a parent’s need for medical treatments. For the past four summers we have stayed close to home because of his hospitalizations, daily infusions, and the unpredictability of infections. Mixed with the guilt that seems to come anymore when I am forced to make difficult choices, I decided we would seize an opportunity and join my sister and her family in Wyoming.
On our fist day we saw a bald eagle – our national bird, once almost extinct. In my 50 years I had never seen a bald eagle in its natural habitat. Soaring high, hunting for food. The white head and tail made its presentation distinct from the other birds. My sister, a wildlife biologist, shared her knowledge of the eagle’s history. To see a bald eagle was amazing, the implications inspiring. Hope is the word that came to my mind as she described its comeback.
Bald eagles were officially declared an endangered species in 1967, after growing public concern over their dwindling numbers. The eagle’s demise has since been attributed to chemical exposure, namely DDT, used heavily post World War II. Fish, the primary food of eagles, were heavily exposed to the chemical run off into the rivers. Bald eagles ate the fish that concentrated the chemical, which ultimately prevented calcium from being deposited in their eggshells. The thinning shells would not protect the unborn birds and so the population declined to near extinction. The eagles started down the path to recovery in 1972, when the Environmental Protection Agency banned the chemical.
Later in the week we did a scenic float trip on the Snake River. As we wound through the high mountain dessert of Wyoming, the Tetons our backdrop, the kids started counting the number of bald eagles. One, two … eight … thirteen … sixteen eagles and three nests. Wildlife biologists estimate one of the nests we saw weighs over 1,000 pounds.
Seeing bald eagles in their natural habitat is a declaration of hope – that we can correct the damage done by the chemical intoxications to our environment. If we can save a bird species from extinction by eliminating use of a chemical that contributed to its demise, can we not correct our pollution of yesterday that is causing cancer in people today, and prevent further contamination of our environment to prevent our children and grandchildren from getting cancer tomorrow?
I believe many people who are getting cancer midlife are the canaries in our coal mine, signaling to us the effects of cumulative toxic exposure, no different than the bald eagles of yesteryear. We can pay attention to the information and do something about it, or ignore the signs and watch more of the fall out.
The science is strong showing many of the chemicals we use to make our clothing, bedding, food, perfumes, lotions, and cleaning agents are absorbed by our body, challenging our cell’s check and balance systems, and taxing our immune system. No doubt in my mind, dose makes the poison. No doubt in my mind, we are all taking in daily a large assortment of chemicals.
For many of us, tackling the environmental issues seems overwhelming, often leaving us feeling a sense of apathy. I know first hand that hope is critical when all else seems to be failing. It is the feeling that what is wanted will be had and that things can turn out for the better. With hope there is life. Without hope there is despair.
This week the media has been reporting the sightings of the first bald eagles in the California Bay Area after more than a 50-year absence. Wildlife biologists are saying their return is proof that the food the eagles are eating is cleaner and contains fewer pesticides. They are citing the occurrence as a true environmental success story.
I saw my first bald eagle in nature at age 50, my children at the ages of 9, 14 and 16. That is hope. Returning to Yellowstone and the Grand Teton for my children without their father was difficult. I have hope that we can do a better job of pulling back on our reliance on chemicals. We’ve done it before. And look what we gained.
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“What lies behind us and what lies before us are tiny matters compared to what lies within us.” One of my favorite quotes from Ralph Waldo Emerson.
Our teenage daughter has had the opportunity over the past eight weeks to be part of a national fundraising effort for the Leukemia and Lymphoma Society (LLS) whose sole purpose is to raise funds for blood cancer research and education. I remember when my husband was first diagnosed and the reassurance LLS provided us knowing we weren’t alone. That my husband’s cancer was being paid attention to and people were already on it, researching and working diligently to find cures. We took part in the Society’s many educational conference calls, signed up for Webinars, and picked up their pamphlets wherever we found them. I even had thoughts early on of joining LLS’s Team in Training as a way to keep fit with people who shared a similar interest, helping to stop blood cancers.
Then life took over and instead of Team in Training, I’ve been running my own marathon keeping our kids, my husband, and all that goes with a young household moving forward. I often think how rewarding it would be to cross that finish line knowing I had managed to pull off a physical feat such as a ½ marathon or century ride and the satisfaction that must come knowing through fundraising efforts I was also helping others trying to keep their lives moving forward while dealing with cancer and it’s craziness. One day, I still promise myself. One day.
In the meantime, our daughter and her friend are participating in LLS’s Student of the Year competition. It’s similar to the 10-week Man and Women of the Year campaign, one of the Society’s largest annual fundraising events. The girls have been working diligently since March 5th to raise as much money as they can for LLS. They have until May 9th with the culmination and announcement of the winners at the Society’s annual gala on May 12th. The theme of the gala – RELENTLESS. How fitting for so many reasons.
Of the five competing student teams, the one that raises the most money is designated Student of the Year. But as my daughter says, “We all win no matter who wins the competition.” Ten teenagers, one cause, one goal and many friends and family showing their love and support through their donations.
I wouldn’t normally use this blog as a means for fundraising. But in this case, it seems fitting. The girls are in the home stretch. We have personally benefited tremendously from the Leukemia and Lymphoma Society’s research, which has saved my husband’s life through their supported clinical research trials. If it were not for the Leukemia and Lymphoma Society, there would not be the many blood cancer treatments he has had to rely on to survive. If you are interested in donating to the girls’ campaign, 100% of which will benefit the Leukemia and Lymphoma Society and its efforts to help families living with blood cancers, you may do so at the official LLS website for Sarah&Amanda’s campaign.
Thank you for your generosity.
Copyright © 2012 Jeannie Moloo. All Rights Reserved.
Read More...“How is the woman in room 312 doing?” “Good. I thought that might be the case.” “No! No! No! I told them Friday morning. She’s having surgery on Friday morning.” The dialog was familiar from a not so distant past. “How are her secretin levels holding? Good! Conference was great. Yeah, I saw Mangela there. He’s doing well.”
Despite the other chatter around me as I waited for my plane, I could only focus on my neighbor’s phone conversation. A young man, most assuredly a GI doctor from what I was hearing. He spoke not with arrogance, but distinct self-importance.
My mind wandered to a time when my husband was a practicing gastroenterologist and then I pictured the young doctor in front of me in a wheel chair, hunched over, skin weathered, no hair, and looking aged from chemotherapy. Once again the all too familiar words crossed my mind. Cancer is such a waste of time.
My mind continued to wander thinking about my husband’s treatments, side effects, surgeries, coma, isolation, his medical practice dissolution, and his patients. I am reminded of a time sitting with him at a major university hospital. As he sat in his wheel chair and we waited for him to be admitted to pre-op for his seventh surgery on his leg, I asked him how hard was it to watch these young doctors walking by engaged in medical speak and looking so important in their white lab coats. He looked at me and stoically replied, “Only when they look past me.” “Look past you? What do you mean look past you?” He went on, a bit choked, which caught my full attention. He spoke hesitantly, “As I was wheeling into the elevator, while you were parking the car, three doctors got on with me – an attending and two younger doctors. I think a fellow and an intern.” He paused. “It was obvious I was slowing them down and it irritated them.” “How do you know?” “The attending pushed passed me to get on the elevator and when I said I’m sorry for being in the way, he didn’t even acknowledge I was there.” “Did you say something to them?” “No. But I wanted to tell them I am one of you. I am a physician. And but for the grace of God, you could be in this chair. Don’t’ ever forget that.”
“Good, Friday morning. I’ll check on her after surgery.”
Copyright © 2012 Jeannie Moloo. All Rights Reserved.
Read More...I met my Mom and Dad at our local hospital’s emergency room (ER) the other night because she had developed an infection in her arm that was causing her to get septic. For most people a simple cut on a finger would not be a big deal, but my Mom has lymphedema, a result of surgery for breast cancer 13 years ago. She spends much of her time working on her arm to keep the lymph fluid draining to prevent such infections. It’s a daily annoyance for her; I am sure a reminder of her experience with cancer. The same type of cancer that took her mother’s life, the same type my younger sister has had to endure.
I’ve had my fair share of ER experiences over the past nine years, ranging from my husband’s spontaneous intestinal bleed to his numerous unexplained high fevers. I could write the book on how to be an engaged waiting room participant without losing one’s cool. The wait this time wasn’t too bad. There was an air of distraction, I think, because of the ensuing holiday weekend.
What caught my attention wasn’t the anxious child with an apparent ear infection, or the woman who was visibly uncomfortable pacing in the corner, or the teenager in the wheelchair looking despondent, or the woman in pain sitting across from us with tears covering her cheeks. It was the loved ones with their ill family member that held my attention this time.
It was the worn out mother with the child, the hawkish husband with the woman walking in pain, the withdrawn parents of the teenager in the wheelchair, and the anxious parents with the woman crying. It was my Father, with my Mother.
Physical hurt is, for the most part, apparent. It presents with visible signs and symptoms. It gives medical professionals information to work with and visibly objective measures for improvement. Emotional strain, however, is relatively silent, insidious, relentless and nearly impossible to quantify. If left unattended it changes moods, behavior, breaks down communication, strains relationships, isolates, contributes to feelings of anxiety and worry, and causes long-term, often permanent negative physiological changes in the body increasing one’s risk for diabetes, heart disease, and, yes, even cancer.
Three years ago I was asked to present the results of a national survey on American’s views of food and nutrition at a large conference. From the airport to the convention center I found myself riding in a cab with a well-respected colleague and researcher in the field of aging. She asked how my husband was doing and I shared we had just returned from four months away for his bone marrow transplant. She paused, twisted around in her seat and looking straight at me told me I needed to pay attention to my own health. Her words were riveting and those I will never forget. She shared that her research had consistently shown within 18 months of resolution of a loved one’s illness, the primary caregiver typically finds themselves newly diagnosed with their own health problem, often cancer. What she also found was the level of intensity and duration of the loved ones illness, the greater the risk and more severe the caregiver’s ensuing health problems.
Her findings, although unnerving, are not surprising given the short and long-term effects of stress hormones on the body. Our body is designed to experience stress and react to it. Stress can be positive, keeping us alert and ready to avoid danger. However, stress can have negative long-term health effects when a person faces continuous challenges without periods of relief between the challenges. The dangerous thing about high levels of chronic stress is how easily it starts to feel familiar, even normal. You stop noticing its role in your life, even as it takes a heavy toll – affecting your mind, body, and behavior.
There is a lot written for caretakers most in the vein of “take care of yourself first so you are there for your ill loved one.” Sounds good, even true, but the realities are most caretakers don’t have the time or resources to care for themselves in the capacity needed to offset the long-term health consequences of shouldering the emotional strain that comes with constantly picking up the pieces surrounding a sick loved one. If the loved one’s illness is chronic and wrapped in unpredictability, such is often the case with some cancers, it can be nearly impossible to gain emotional relief when the potential for crisis is always lurking.
Many have said there is a silver lining in adversity. I say life becomes draped in a silver cloak when you live with cancer. My cloak – I have had to adjust my approach to life. I now pick my battles. I have learned that I cannot lead the charge on every one of my husband’s health struggles. I am finally accepting that my emotional drain will always be open as long as he is struggling. I am learning how to wait patiently in an ER.
Copyright © 2012 Jeannie Moloo. All Rights Reserved
Read More...Our daughter came home from school the other day and asked if she could buy a sweatshirt to support a classmate who was recently diagnosed with lymphoma. “Lymphoma? Are you sure, honey?” “Yes, Mom. She sits next to me in my English class. I mean she did, she hasn’t been there for the past few weeks.”
The family is struggling with medical bills and the students at the high school have decided to sell sweatshirts to raise money for her care.
The unknown for the family must be driving fear, anxiety, and sadness. This is a time when their daughter should be going to homecoming dances, shopping with friends, staying up late at sleepovers, and visiting colleges to help decide where she wants to apply for the next phase of her life. Hopefully, treatment is a success and she becomes a positive statistic. One of those numbers that we take comfort in, showing us we are making headway, standing up to cancer.
With current treatments, more than 80% of children and adolescents with non-Hodgkin Lymphoma will survive at least 5 years, according to the National Cancer Institute.
The conundrum – the personal costs for cancer are not always shown in the statistics. The physical and emotional pain, the side effects of repeated treatment, the decreased ability to be productive, the stress on family and loved ones, the loss of income and life goals, and the reduced ability to contribute fully to their communities – these are not part of the statistics we use to gauge our success in “fighting” cancer.
If this same child were tragically hit by a car and critically injured or killed, we would be aghast, outraged, and angry. We would want to know how did such a horrific accident happen? Who did it? Was the person driving under the influence? Were they distracted using their cellphone? Simply and honestly we would want to know what caused the accident? I doubt many of us would be pacified with the recent advances in trauma care.
I have noticed recently I don’t hear the same outrage or questioning when someone is diagnosed with cancer? Sure, I see despair and sadness, confusion and shock, but very rarely do I find people asking – why? Why does this 16-year old have lymphoma? Instead, I see comfort taken in the treatments being more successful today – a reassurance that life will eventually get back on track for this child. As if cancer is an inevitable and unfortunate part of life.
Have we become desensitized to the disease? Have years of campaigns such as Race for the Cure, Stand Up to Cancer, and LiveStrong, raising billions of dollars to “fight” cancer, encouraged a false sense of reassurance that if we get the Big C odds are good we will be cured?
I am grateful for the efforts made by the many organizations working diligently to improve screening and advance medical treatments to end cancer. My family has benefited tremendously. I don’t, however, subscribe to the belief that chasing the cure is where the answers lie. Identifying the causes and minimizing their influence is where the real impact is going to be made in ending cancer.
Maybe the causes feel too mysterious, numerous, and overwhelming for us to address, so we choose not to push the questions why or how did a 16-year old develop lymphoma?
Maybe it’s easiest to take stock in genetics. As the thinking goes, some people are just more at risk because of their genes. Certainly heredity plays a role, however, if heredity were a main cause we wouldn’t see incidence rise rapidly over the course of a few generations. Our genetic pool doesn’t change that quickly. But our environment, that where we grow up and live, has changed dramatically over the past few decades.
In toxicology the reigning phrase remains – Dose Makes the Poison. We have more than 50 years of research buried in libraries throughout the world showing many of the chemicals we spray on our food and use to make our clothes, children’s toys, and packaging of our favorite purchases, have the potential to cause cancer. For some people, the dose of these chemicals has become their poison.
If we want to end cancer – I believe we need to seriously and collectively acknowledge how and where it starts. Along with racing for the cure, we should be standing up and racing to slow and eliminate exposure to the causes.
Copyright © 2011 Jeannie Moloo. All Rights Reserved.
Read More...It was a week ago today that our 13-year old son shouted from the computer downstairs, “Mom, Steve Jobs died.” A silence fell among the children and myself. Their dad was not home. He was in the hospital for his third surgery, in as many weeks, to rid an infection that has plagued him for 16 months.
Our 16-year old daughter came for a hug, our son at the computer came to the base of the stairs looking up with disbelief and confusion, our youngest began talking about his latest Lego creation, trying to bring life to the silence.
Mr. Jobs was diagnosed in 2004 with pancreatic cancer, had a liver transplant in 2007, and obviously a rocky road since. He and his life with cancer had often been a part of our family conversations. How did he and his family manage? What was it like for his children to see their father ill yet carry on as if life were normal?
One of my husband’s physicians was a neighbor of Steve Jobs. Over the years we had heard stories about their children’s shared sports activities, and smile, in an odd sort of way, knowing that Mr. Jobs too knew life with cancer. He brought to our family this image of hope as he continued doing what he appeared to be doing well, create, invent, and live, with cancer. In a strange sort of way his life provided a bit of reassurance for my family and me. Now he is gone and collectively we feel his absence.
Last night I listened to his 2005 commencement address to Stanford University graduates. If you haven’t had the chance I highly recommend listening to his inspiring speech. There are many quotable thoughts that he shared, some of which have been circulating in the media since his death. He told the graduates that the entrepreneurial spirit is about connecting the dots and he gave examples in his life where significant events connected together to enable him to create Apple Computers, NeXT, and Pixar companies.
His words, “You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something – your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”
Living with cancer and its treatments can be challenging. Steve Jobs and his family knew this all too well. I wonder the picture our life will draw when I look back years from now and connect the dots.
Copyright © 2011 Jeannie Moloo. All Rights Reserved.
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