Relentless

“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 5^th 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.

Only when They Look Past Me

“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.

My Silver Cloak

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

The Race to Stand Up to Cancer

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.

Connecting the Dots

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.

Trinket in the Jewelry Box

Last night our son was going through my jewelry box. He’s a precocious, I think adorable, 9 year-old.  He says to me, “Mom, if we need money we could always sell your jewelry.”   It unnerved me his concern over money and then I realized he had been overhearing the conversations my husband and I had been having lately about health insurance and growing medical costs and our concerns about medical debt.

As my son sorted through my jewelry he came upon a coin that grabbed his interest.  It was an inspirational piece you might find in a gift shop or stationery store.  He paused to read the inscription.  Looking at me he said, “Mom, where did you get this?”  I couldn’t recall – something that seems to be happening more and more frequently as of late.  “Will you read what it says and maybe I’ll remember?”

In his sweet, angelic voice he read one side of the coin, “Cancer”, then he turned it over and continued, “Cannot defeat the soul, cannot shatter hope, cannot depress faith, cannot destroy homes, cannot limit humanity, cannot kill friendships, cannot silence courage, cannot ruin the soul, cannot reduce the spirit, can be overcome …”

I took a deep breath and looked at him.  His eyes were wide, bright and he had a smile on his face that cut straight through to my heart.  I could tell he was pleased with himself.  He had touched his mom and he knew it.  This is a child who has only known his father to have cancer.  He has never experienced a day, in his short life, without his dad either being extremely fatigued or physically ill from cancer or its treatments.   At his tender young age he knows the fragility of life and yet his smile comes from a place of pure joy and happiness.

I wrapped my arms around him, buried my face in his thick hair, and mindfully held onto the feeling of calmness that came over me.  It’s these simple moments that bring everything full circle.  It is true.  Cancer can be overcome.

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.

Another Three-Day Weekend

Every time there is a holiday weekend I find myself in a slump. It never used to be this way, but it seems holidays serve as a benchmark for our life living with cancer, throwing me into a reflective mood. When the mood takes hold I am compelled to recall where we are in life and why we are here.

Last night our daughter said to me, “Mom our life is boring. My friends do so many fun things on weekends, especially three-day weekends.”

As we sat watching television, her scrolling through Facebook on her phone, I found myself reflecting, yet again. The weekend is here – a holiday weekend.

There is a reason we don’t have any plans. For many years now we have been a family whose social activities have been dictated by cancer and its treatments. Some might say don’t let it dictate, instead regain control. That sounds logical enough, but then there is reality.

What becomes difficult is when you live with the intensity of chronic cancer care for years, not months, but years, the repeated last minute canceling on planned activities results in two things happening. You stop planning because you desperately want to avoid the disappointment when you have to cancel, and in turn, you stop getting invited.

Two years ago when our family had to miss Thanksgiving dinner for the second year in a row, I swore off planning for holidays or any social events. This was after a two-year run of planned weekends, vacations, and dinner parties being routinely canceled. No matter how hard we tried to continue a family calendar of fun, it just would not happen and the intense disappointment with each missed event became overwhelming, especially for our children. Instead, I chose to focus on being spontaneous. My standard answer for invites and to the children has been, “we’ll see.”

Of course, this has not made us the ideal invitees. More importantly, I have come to realize it has robbed us of the joy that comes with looking forward to a dinner with friends or a weekend away.  Some I’m sure are going to think how unfair of me.  However, when something negative happens repeatedly, over a prolonged period of time, a different approach is sometimes warranted.

What has always amazed me on this path is the emotion of hope and how it can be a driving force in so much of what we do and feel. Some psychologists believe hope comes into play when things are not going well or when there is considerable uncertainty about how things will turn out. I think hope is innate in all of us and regardless of whether or not things are not going well, it’s a desire to want better.

Here we are again, another three-day weekend. No plans. Maybe it is time to plan something spontaneous.

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.

Am I So Different

My husband’s appearance has changed dramatically since his stem cell transplant. The donor’s cells he received to replace his cancer ridden immune cells and “cure” his cancer see his body as a foreign body and attack, in his case, his skin. The donor’s cells are on a search and destroy mission and any organ such as his liver, eyes, intestines, or kidneys are fair game. The donor’s cells are just doing their job, after all, they are in a foreign place, somebody else’s body. This process is known as graft vs. host disease and one of the major risks of a bone marrow or stem cell transplant. When the target is the skin it can be particularly devastating both physically and emotionally. Doctors try at all cost to avoid graft vs. host disease, but for some transplant recipients and their families it becomes an inevitable part of their lives.

I came across this poem the other day. I have witnessed the stares, over heard the comments, and explained more times than I can count why my husband looks so different than before. After all the explaining, I’ve come to realize that no matter the reason what really matters is not the “why” but as the poem’s author writes, “give me your smile that’s true and bright, walk with me through each tomorrow, don’t shun me out of fright.”

I wish I could give the author credit, but they signed their poem Anonymous.

Am I So Different

Am I so different because I’ve lost my hair,
is that the reason you feel a need to stare,
am I so different because of things I cannot do,
does that really make me less normal than you,

Am I so different, so different from you,
is making me uncomfortable a pleasure for you,
if my looks are upsetting to one and all,
just try and remember that my life is no fun at all,

You see me like this and wince as I pass by,
never once do you notice the tear in my eye,
it’s not illness or pain that makes me cry,
it’s your stares and snide comments as I walk by,

So, please, I implore you, take this to heart,
I am truly human, not a species apart,
this illness is my burden, a heavy one too,
if not for a misfortune, this me could be you,

My life is now a battle,
this cancer I must fight,
your cruel and hurtful prattle,
pains me day and night,
instead of pain and sorrow,
give me your smile that’s true and bright,
walk with me through each tomorrow,
don’t shun me out of fright.

-Anonymous

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.

Got Cancer?

During my usual scroll through Facebook this morning it struck me the number of recent posts from friends and family about someone close to them either dealing with cancer or having recently died from the disease.

I once asked my Mom how many people she knew when she was my age who had cancer?  Two people came to her mind.  One was an in-law who had breast cancer in her forties and the other a brother-in-law of one of her dear friends who had died shortly after being diagnosed with leukemia, also in his forties.  Two.

When I consider my close friends who I have known for more than ten years, I count 16 between the ages of 40 and 55, who have received a cancer diagnosis in the past five years. 16!

Some have told me I am just acutely aware of the cancer around me because of my husband.  I disagree.  Each of the 16 friends I have known well before my husband’s diagnosis.

Do I know more people than my mom did when she was my age? I don’t think so.  She was an elementary school teacher for 28 years.  She knew hundreds of families.  Cancer diagnosing has improved, so maybe it is earlier detection? Certainly that is part of it, but I don’t think that is going to count for such a dramatic difference – 2 for Mom, 16 for me.

Each time I hear of a cancer diagnosis, especially in someone middle-aged, I find myself focusing on the word ‘why’.  Why so many? Why so young?  We are good at asking why does cancer spread?  Why does cancer come back?  If cancer rates are indeed higher among the middle-aged compared to a few generations ago, we should adamantly be asking why?

Do your own count.  Unnerving, I know.  Count only your friends, who have received a cancer diagnosis in the past five years, are between the ages of 40 and 55, and you have known for at least ten years.  Don’t count acquaintances, people you casually know, or coworkers or neighbors unless they are close friends.

Chances are you too know someone close to you, young, in the prime of their life, raising a family, making a go of their career, who have been halted in their tracks by the disease and its treatments.  It is a disheartening realization to actually stop, pause, and make a tally.  See if you then find yourself asking, why?

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.

House Rules

I came home today after running errands to an interesting, rather awkward, but not unusual occurrence in our house.  Feeling accomplished from knocking out dropping two children at swim practice, and hitting the grocery store and bank, I walked in our front door expecting to find our son and my nephew busying themselves.  What I found instead was a stranger with her back to me sitting at our kitchen table.  She had frizzy, obviously over treated, blond hair and was wearing clothes that reminded me of the uniform the nurses wear in my children’s pediatrician’s office.

My son looked at me nonchalantly, while attempting the dishes, in true 13-year old fashion – one slow movement at a time – with his 6-year old cousin glued to his side. My husband was late returning from the infusion center where he was receiving an IV of IgG to help boost a waning part of his immune system.  There were a few minutes of overlap where neither one of us was home.

“Hello.  Are you here to see my husband?” I asked.  “Yes,” she replied without lifting her head from whatever held her interest.  “He should be here shortly, may I get you something.” “No I’m fine.  Actually quite happy here.”  I paused and thought, “Ok, I’m glad you’re happy here.  But why are you sitting at our kitchen table?”  I could see from a side-glance she was fiddling with her cell phone.

How odd I thought for a child to have a stranger in their house, sitting at the kitchen table, not saying a word studying their phone.  I had to give my son credit for making her feel comfortable.  I guess we had taught him some manners.

We do have house rules.  Always turn off the lights and appliances when not in the room.  Replace the toilet roll if you finish it.  Don’t answer the door for strangers when mom and dad aren’t home.  Never let a caller know your parents are out.  Over the past 13 months, however, some of these rules have been modified in order to accommodate my husband’s treatments (the toilet roll rule still holds).

It’s not unusual for me to come home and literally bump into someone I’ve never met as they are entering our house from the garage having dropped off my husband’s IV medications in the refrigerator.  The first few months it unnerved and even angered me each time I surprisingly encountered a stranger making their way through our house.  But as the IV therapy and wound care treatment demands continued, it became overwhelming to keep track of each person coming and going.   Today, I see where my casual attitude towards strangers in our house has infiltrated our lives to the point of confusion for my son.

The wound care nurse at the kitchen table was not a stranger to my family, even though we had never met her before.   She was someone who was here to help my son’s father heal.  Why would he not answer the door and invite her in, even without a parent home.  Dad needs her care.

How odd that this disease has become dominant to the point that rules present to ensure our children’s safety have been ignored to accommodate the disease and necessary medical treatment.   I’m sure some would be shocked that a mother could set her children up to receive strangers into their home with no adult present.  I assure you I am asking myself the same question.  When I look at the disease and the treatments we’ve endured, I can see how it has happened – slowly, progressively, methodically – like the cancer that invaded my husband’s immune system.  Cancer is an insidious disease that can, when guards are worn down, affect even the most sacrosanct areas of a family’s life – slowly, progressively, and methodically.

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.