How do I support my friend whose spouse has cancer?

Five times in the past two months I’ve been asked advice about how to help a friend whose spouse has been diagnosed with cancer. It’s a bit unnerving the number of  young families being impacted by cancer. As the grateful recipient of support and prayers during my late husband’s 12-year struggle with the disease and its treatments, I’ve learned much about the practicalities of helping a friend or family member in this situation.

One recent inquiry was from a distant in-law asking how he could help one of his best friends cope with the recent diagnosis of his wife’s cancer. His email read (reprinted with permission, names changed):

“The wife of one of my best friends was just diagnosed with ovarian cancer. I know how difficult the whole journey will be for his wife Deb, but also for my friend Mike who has to try to hold the family together as you did (they have two young girls). Mike and I are very close and have been friends for 25 years. They live in another state, so we are not physically nearby. I’m struggling with what I can do to support him, particularly given I don’t live in the same city. I worry about getting too intrusive or getting too upset, but I also can tell that her family is there, focused on helping her, and I know that he is going to go through some difficult times. I’m guessing there is no simple answer to what is the best thing I can do to support Mike, but if you have any advice about what to do or not to do given your experience I would very much welcome it.”

Following is some of the advice I offered that may help others in a similar situation.

During the throws of diagnosis and the initial treatments, the couple is most likely hunkering down, in disbelief, in shock, and in full on fight mode. I’m sure friend’s that live close by are rallying, but know that that lasts for a relatively short time (compared to the duration of some cancers), maybe a few months, and then some friends will fall away as their cancer story becomes stale.

There is something very important you can do from a physical distance. Your friend’s wife is getting much care and inquiries from doctors, nurses, friends and family. She is being asked how she is doing. How the children are doing. What can folks do to help. Your friend is also being asked how is his wife is doing, how their children are doing, what can people do to help him take care of his wife. The focus is on her, as it should be, and her path to better health.

When someone is diagnosed with cancer, we tend to focus on the patient and often overlook the impact of the situation on the primary caregiver and the immediate family members. We will tell our friend to let us know how we can help, without realizing most caregivers in this situation are so busy just trying to support their ill spouse and take care of their children, that they don’t have the time, energy, nor the space to stop and think what they need.

I know the urge is to feel you need to be physically present to help, but don’t underestimate the power of friendship in times like these. You can help from distance by checking in on him regularly via text, phone calls, and emails. Ask him how he is doing. If you can get him to open up and talk about his own feelings, fears, and concerns, it will help immensely. Out of habit, he may talk about his wife’s condition, treatments and procedures, but stay focused on him. Don’t be tempted to offer advice or feel you need to solve his problems. Reaching out to your friend on a regular basis, asking him how he is doing, and listening openly can be a critical part of his support system through this extremely challenging time.

A smile and momentary pause 

It has been five months since my husband’s passing. Our kids and I have spent the past few days at Spring Training in Scottsdale, Arizona, watching our favorite MLB team play baseball.  The trip was in part a gift from a dear friend who understands cancer and caregiving. She made me promise not to spend her monetary gift on college tuition or bills, but to take the children on a trip.

This trip was the first vacation the kids and I have taken since 2011, the last time we were here. My husband could not join us because he was dependent on IV medication. Somewhere in the course of 1,000 plus consecutive days. Being tethered to an IV pole limits what you can do as a family.  

I remember the stress and strain of being away from him in 2011. The worry of him getting another infection. How badly he must have been missing us. The guilt I felt being able to travel when he couldn’t. The grief I received from some who disagreed with my traveling with the children without him.  The prevailing sadness because he couldn’t be with us. We were a family on a trip, minus one, Dad. 

This is nothing unique to families when a parent is ill. There over 2 million children in the U.S. today living with a parent with cancer. I have no idea how many minor children have lost a parent to the horrible disease. I suspect the number is growing. I do know it changes many things for these children. 

Traveling on this trip has been different. We learned in 2011 how to include my husband. Photos. Texts. Live time chats with him. Game recaps.  Even though he wasn’t physically with us, we tried to include him as much as possible.

This time he was with us in a different way. Guiding us, making the trip seemles, and making sure our son was able to get the one signing he most hoped for, from his favorite ball player, Joe Panik. After signing a couple of baseballs for other kids, Panik turned and walked over to our son, as if he were being directed to include the boy on the end. It was the exchange of their smiles and momentary pause when I felt my husband telling me we did the right thing back in 2011. As emotionally difficult as it was then to take a four day vacation while he was struggling with cancer treatments, the experience brought us a profound sense of family this time. The five of us, still together.  

Resolutions – Beyond Added Sugars

On New Year’s eve I found myself sitting with family and friends feeling on the outside of a conversation about resolutions. We were sharing our resolutions for the year in some attempt to make them stick. We all knew it, but no one voiced it. Making them stick. Oh, the biggest challenge.

I’d read a few days prior that rather than create lengthy resolutions, pick a word and focus daily on its meaning. Activity – a gentle reminder to be more active could transcend into improved physical fitness. Patience. Creative. Health.

Discipline – the word jumped out at me. That’s it. The core of my frustration for so long now. I reminisced about how disciplined I used to be and the peace that it brought me. Then, cancer while raising children. Sounds like an excuse, but it’s really not. Cancer brings chaos. Raising children brings chaos. Doing the two simultaneously, well that’s borderline insanity making. An inability to plan follows chaos and exhaustion follows the two. Being disciplined takes focus, energy and an ability to plan. Yes, plan. With cancer to the degree we experienced it, relying on the ability to consistently make short and long-term plans left our lives long ago.

As I sat listening to everyone’s New Year’s resolutions to lose weight, exercise regularly, eat gluten-free, count carbs, avoid white foods, and limit added sugars, I realized I felt so out of touch with the conversation. Then it was my turn. I had nothing to share. I couldn’t even borrow someone else’s idea because none of them spoke to me.

Sure, I’d like to lose the weight I gained during the past stressful year – but that will come with discipline. My choice word. Discipline. Pasted on my bathroom mirror, in my car and on the refrigerator. Done. No need for a lengthy resolution.

Then a friend texted me last night asking about my resolutions for the year. I recalled an article written by Rachel Zimmerman on resolutions and featured on NPR. My reply was simple. Read, sleep, play and love. I must have reread those words I had written ten times before replying. That’s it. Connection and joy. What those of us most wish for on the heels of the chaos infused by cancer care while raising children and the loss of your
spouse. Connection and joy.

Read, sleep, play and love. My resolutions. Oh, and welcome back discipline.

Frittata – A Gift of Love

I tried the year in review app on Facebook this morning just to see what photos would appear. To my FB friends and family, no worries, I won’t be sharing. After 12 years of cancer tugging at us, directing us, cajoling our decisions, and inserting chaos that most don’t ever have to deal with for that duration, Nasir passed on October 28th.

We have just had our first Halloween, Thanksgiving, and Christmas without his smile, calmness, and love. The pervasive sadness and grief felt among our children and myself has permeated most of the holidays.  The subtle family traditions I wasn’t even aware of have been everywhere.

“Mom, what are we going to have for breakfast on Christmas morning, Dad always made his frittata?” “Should we hang Dad’s stocking?” “Is Santa coming this year?” – wink, wink. Mexican wedding cakes, pecan tarts and fudge – all of his favorites that we made each year. The Thai food – his favorite shared with my brother’s family on Christmas eve.  The gift bags from last year with his name – either to him or from him. His gentle reminders of the Muslim holiday traditions and focus on acceptance of all beliefs, as we celebrated one of the biggest Christian holidays. His love of food, family and friends, and most of all Us.

Yes, this holiday is also marked with memories of him in the hospital. One Christmas day because of an infection. Another because of side effects from chemotherapy. Another Christmas day with him home but on 100 mg of daily prednisone to calm the graft versus host disease from his transplant. And, yet, another, with him too weak to do much of anything but sit quietly in his chair in pain from the infections in the bones in both legs.

Our children are brave. Society talks about the “fight” against cancer. The warrior, hero, survivor in those that “battle” the disease. Aggressive words. Each one of them conjuring feelings of control filling our human pysche with a feeling of power. Truth is, with cancer, there is much chaos making the family in the “fight” feel powerless.

I found myself rummaging through our cookbooks for a remotely similar frittata recipe. Frustrated at myself for not keeping better track of things, oh, so many things, I decided it was time to vett through the loose papers among my cookbooks. Amidst the chaos, the loose recipes, and old recipe books I hadn’t looked through in years, a single piece of paper fell to the floor. Neatly folded with very small writing I let it lie there while I continued to vett through the mess. He never wrote anything down. Rarely cooked, but always a frittata on Christmas morning. Why didn’t he write it down? Why didn’t I do it?

Finding a basic frittata recipe in Mark Bittman’s, How to Cook Everything, I at least had a go to. Time to put it all back on the shelves. And there it was the piece of paper that had fallen to the floor a half an hour earlier. A Christmas present from Nasir.

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Yesterday morning our daughter, his sous chef the past few years, made his recipe. We missed him terribly. We said grace, shared more memories, and enjoyed his gift of love – Nasir’s frittata – forever one of our family’s traditions.

Cancer and baseball and a passing comment… the connection

Written almost a year ago to the day .. Alexander’s school’s annual holiday show is this Wednesday.

Balanced Living with Cancer

Woke this morning with events of yesterday replaying in my mind and shouting to be put down in writing.

Yesterday was an interesting day. Most of it spent at the ball park, freezing I might add, with an incredible group of parents and friends watching our boys play baseball in a tournament. It was a hard day for the boys. And probably an even harder day for the coaches, I imagine. Frustration is a word that comes to mind. We lost both games, the second one badly, as the boys struggled to keep their focus with each scoring run by the other team.

Later in the evening, Alexander and I visited friends at an annual holiday party. Visiting, laughing and playing the drums (yes, I did, along with others) –my son was mortified, but dang it felt good – was what we both needed, especially after the past week.

You…

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Giving Up … I think Not

This past week two friends died from prostate cancer and another isn’t doing so well with head and neck cancer. Another friend’s father-in-law passed last week from leukemia, having chosen to forgo treatment and enjoy his final days without the side effects. Other friends have lost friends to cancer this past month – one who was only 30 years old, with an 11 month old daughter, to stomach cancer.

A guest lecturer spoke to my nutrition students last week on home health care. She presented a case study about a gentleman who was being treated for cancer and was being fed through a tube at home. Everything was very matter of fact in her presentation. The photos she shared were graphic. Her descriptions for why the patient needed home tube feedings were hitting close to home.  And then she spoke words that I’ve railed against for some time now. When a student asked her what had finally happened to the patient the lecturer replied, “He gave up.”

Gave up? I’ve never met anyone who “gave up” while dealing with cancer.  Some have died, but none ever gave up.

 

Copyright © 2014 Jeannie Moloo. All Rights Reserved.

Three headed frogs and other anomalies

I had a doctor appointment the other day.  I needed to find a new primary care physician.  My previous physician decided to turn his practice into a boutique practice – good for him. 

As my new physician entered the room, I initially thought she was another patient stepping into the wrong exam room. I abruptly acknowledged her presence and then asked if I could help her, thinking she was lost.  She smiled and said, “Well, that’s a twist.”  The next thing I knew I was ten minutes into a  20-minute conversation talking about her recent surgery for cancer – a desmoid tumor.  She is 44 years old with a 7-year old son. 

What struck me was her demeanor.  When she entered the room her shoulders were hunched, she was soft spoken, not with the typical business like approach many doctors will take on a first greeting. I could tell the recent cancer diagnosis and surgery had taken her thunder.  She went on to share, “I always thought I was a compassionate person, but not until I had gone through an actual cancer diagnosis and this surgery did I realize what my patient’s really go through.”  She paused.  Took a deep breath and then continued.  “Enough about me, how are you doing?”  

“Desmoid tumor, I never heard of it.” “Only 900 are diagnosed a year, making it extremely rare,” she replied.  I repeated the number to make sure I’d heard her correctly.  “Yes, 900,” she repeated.  This means out of every one million people, two to four people are diagnosed with the tumor. There isn’t any cure. She’s bracing for a lifetime of surgeries.

In graduate school I studied preventive medicine and environmental health. Many of the required courses were environmental toxicology and epidemiology (study of diseases in human populations).  When I heard 900 cases a year, I immediately thought of the photos of frogs with three heads or six legs I had seen in my toxicology classes.  Each occurrence was considered a freakish anomaly, being used by my professor as an example of something going horribly wrong in our environment.  

I wondered, a 44-year old physician with an extremely rare cancer, doesn’t this fall into the “freakish” category? Or, in order for something to be considered concerning and warranting serious attention, do we humans have to start growing three heads?

Each time I hear of a young friend, or acquaintance, or read about a celebrity who has recently been diagnosed with cancer, I recall my initial meeting with my new physician and wonder when will enough be enough and our shock and concerns resonate loud and long enough to be heard collectively, as if we’d seen a three-headed frog.

Cancer and baseball and a passing comment… the connection

Woke this morning with events of yesterday replaying in my mind and shouting to be put down in writing.

Yesterday was an interesting day. Most of it spent at the ball park, freezing I might add, with an incredible group of parents and friends watching our boys play baseball in a tournament. It was a hard day for the boys. And probably an even harder day for the coaches, I imagine. Frustration is a word that comes to mind. We lost both games, the second one badly, as the boys struggled to keep their focus with each scoring run by the other team.

Later in the evening, Alexander and I visited friends at an annual holiday party. Visiting, laughing and playing the drums (yes, I did, along with others) –my son was mortified, but dang it felt good – was what we both needed, especially after the past week.

You know how you can be engaged in something and someone makes a passing comment, shares a thought, and you realize you just heard the missing thread that draws seemingly unrelated feelings together? I love it when this happens! I feel like I’ve been let in on a secret and now I have to share.

It’s Christmas week, our daughter just came home from her first quarter at college, our sons were wrapping up their school week before vacation, and I had my college exams to give until just a day ago. And then my husband, midweek develops sudden high fevers and he is admitted to the hospital during our youngest son’s school holiday show.

There the three of us were. My daughter and our youngest son on stage uncomfortably, but adorably singing, “We wish you a Merry Christmas!” And their Dad, yet again, at the hospital. A fair estimate I have is this was probably somewhere around his 30th hospital admission in the past four years. As I sat listening to Christmas carols being sung, I wondered how many other families would have continued on the path of the evening or would they have chosen to abandon a holiday tradition to be present at the hospital with their spouse, their father, their loved one. He was in good hands. Not much we could do during the admission. We visited after the show. It’s the high wire act we live, keeping life as normal as possible for the children, and managing an ailing chronic condition. I cannot accept that I may never be able to articulate the disconnect I feel at times when my life is this chaotic. It makes many moments seem almost surreal.

Now, for the thread. A friend at the party, one I haven’t seen in a while, said she’d heard my husband was in the hospital and commented, “You must be used to it by now. Probably no biggie.” She meant kind words. However, they stuck and they stung. I wanted to shout, “Nobody gets used to it. As a matter of fact, with each admission the kids and I relive a flood of emotions of all the previous admissions like a bad dream.” But, I spared her.

The truth is, as hard as it is for the patient to be admitted, it’s pretty darn trying for the family. I write this for the other’s going through something similar. I use the example I was given a while ago. When someone narrowly escapes a fire in a burning building, their mind remembers the experience and emotions elicited in order to use the information in the future. It is part of our survival instinct. The next time that individual smells smoke in a building, they are going to respond very differently than the person who never experienced being in a burning building. In a matter of seconds, feelings of needing to escape are going to flood the experienced individual because their mind had the previous experience to draw on.

When a loved one is admitted to the hospital, it is probably one of the most stressful events a family can experience. If they are lucky enough, the admission goes well and it’s a very long time before it ever happens again. In our case, as with many families dealing with cancer, hospital admissions are common but no less traumatic with each admission. I argue they actually build on intensity because of the previous experiences. In our case, we have been told my husband wasn’t going to make it on two separate hospital admissions. We have shown up to his room to find him having been suddenly moved to the ICU. We have visited him in isolation where we have had to dress in gowns, cover our faces, and wear gloves to just touch him, for 88 continuous days. Those experience carry incredible weight with my children when they hear, “Dad has to go to the hospital.” What I’ve noticed is how most respond to us as if we should be used to it. And we just aren’t.

What I have learned from my children and their sports endeavors, is when there is a loss sometimes it’s best to just let it be. Take some time to process the feelings. Kind words from another can help, but they won’t necessarily ease the pain. But they do help. Getting back to practicing and moving on to the next game is sometimes the best thing you can do. Trying not to let the past experiences influence your perceptions of the current, but approaching as much as possible the new game with a clean slate. A fresh start.

The second half of the tournament is today! Good luck boys!

My husband came home Friday evening after only two days in the hospital. They could not find the source for his fevers. More tests will be run before and after Christmas.

Critical Mass – Some Random Thoughts

As the journey continues with my husband’s cancer and grueling treatments, there are moments when I am completely stopped in my tracks and reminded of his chronic cancer care over the past decade. Our children are now ages 11, 15 and 18. Recall, cancer entered our family three weeks before our third child was born and has been actively present since.

Yesterday, I was at the UC Davis Comprehensive Cancer Center for a work related activity – a symposium for nutrition majors from area colleges about dietetic internship programs in California. It was one of the few times I’ve been to a cancer center that didn’t involve a doctor appointment – Fred Hutchinson (Seattle), Stanford (Palo Alto), and MD Anderson (Houston), some of the best cancer hospitals in the world – I know them each well.

As I approached the receptionist she motioned gently that the auditorium was down the hall. Thank you, but not what I wanted to know. I had already checked out the room where we were meeting, and was now on a quest to explore the rest of the Center.

Comprehensive Cancer Center.  I find the relatively new designation given to certain qualifying cancer hospitals, by the National Cancer Institute (NCI), to be a bit misleading.  At the cancer centers I’ve visited, I make it a point to explore the options for families of cancer patients, especially those in our situation, with minor children. Generally, resources for families with a parent with cancer and minor children are lacking even at the Comprehensive centers.  But I always ask, nonetheless.

“What do you offer for family members with young children helping a parent struggling with cancer?” “Oh, you mean caregiver support groups.” For some reason, I have grown to dislike the word caregiver. I’m not able to fully articulate just why, yet. Care giving.  Care taking. We are all caregivers and caretakers are we not – moms, dads, aunts, uncles, teachers, nurses – the list goes on. Maybe the term is too generic, overused, and non-descriptive for my liking.  “Sure, the caregiver support group,” I replied.

“We have toll-free conference calls for caregivers.” And she hands me a card, which reads, “Recent studies show that caregivers, especially men caring for wives with breast cancer, suffer from increased anxiety, fatigue, stress and other health risks.” The card goes on to describe how one researcher refers to caregivers as “invisible patients – they are ignored and not included as respected members of the healthcare team – and they suffer from it long after the loved one is disease-free.”  That’s novel I thought. A comprehensive cancer center and they offer a toll-free support group for caregivers.  “Can you call anytime?” I asked. “No, they hold one meeting a month on the first Tuesday from 11-12 p.m. After your first meeting, you get a free book sent to you written by one of our physicians.” She handed me another card about the book – How to Heal: A Guide for Caregivers by Jeff Kane, MD.  The book sounded hopeful.

Family communication experts have documented time and again that when a parent experiences a major and/or chronic illness, the nature of the family life is dramatically altered.  The well parent and children have to assume a greater responsibility in a caregiving role, family leisure activities are often restricted, and the health of the ill parent can become a dominant theme of family interactions.

Even though these family adjustments are often a necessary family response to the stress of a parent’s illness, they can come with serious repercussions.  The dominating theme of a parent’s illness often means that the children in the family do not get as much attention as they would otherwise.  Depending on the intensity and duration of the illness, the opportunities for a husband and wife to spend time by themselves may be entirely eliminated. Likewise, the opportunities to attend to the maintenance of their marriage may be greatly reduced, as their interactions and dialog may be largely centered on the care of the ill parent.

I was immediately reminded of a time last year when my daughter and I were volunteering at the Leukemia Lymphoma Society’s Light the Night Walk.  I asked the director of nursing from a bone marrow transplant program in another northern California hospital system if she knew of local support groups for young families struggling to care for one of the children’s parents with cancer.  She said she did not and our conversation ended with her words resonating like the repeating lyric in an irritating song, “I guess your situation hasn’t yet reached critical mass,” and with that she resumed handing out brochures to potential patients about her hospital’s bone marrow transplant program for blood cancers.

Critical mass. The National Cancer Institute estimates that 24% of adults with cancer are parenting a child younger than 18 years. This translates to an estimated 3.3 million minor children in the United States who are currently living with a parent newly diagnosed or having been treated for cancer (Weaver, et al). Surprisingly, despite the number of families affected there is little information about their needs and outcomes.  Shouldn’t this be a focus of our NCI designated Comprehensive Cancer Centers? I guess it depends on one’s perspective. Maybe we haven’t yet reached critical mass.

Returning to my meeting in a standing room filled with 150 eager college seniors I was struck by their enthusiasm. I was once one of them, eager to continue my education to be able to help people prevent and manage disease through a nutritious diet. Yes, prevent disease. The irony is not lost on me.

Reference: Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population—based estimate of the number of US cancer survivors residing with their minor children. Cancer. 2010 Sep 15;116(18):4395-401.

Copyright © 2013 Jeannie Moloo. All Rights Reserved.

Why Ask What

The clapping echoed through the long cavernous hallway.  No shouting, no hollering, just thunderous clapping.  Another wave.  Trying to find room 111b in the Philadelphia Convention Center I was reminded of Nicolas Cage in the movie National Treasure searching for the next clue.  There it was again.  Then the pink shirts, pink scarves, and caps.  The line was long, the excitement contagious.  Hundreds of women dressed in pink, walking, cheering.  Oh, yes – it was the first day of the Susan G. Komen 3-day Walk for the Cure.  Nationwide hundreds of thousands of women walking in support of someone they knew who had breast cancer.  Raising money for the cause.  Doing their part to help, or honor, a loved with a horrible disease.

I wondered how many of these walkers had ever stopped to ask the question, “What caused her breast cancer?” It is a natural question to ask.  What caused my Mom and sister’s breast cancer? What caused the breast cancer in five of my girlfriends and two of their mothers?

I once asked my husband’s physician what caused his lymphoma. Even though I knew it was not a question that could be answered about him specifically, I asked anyway.  Maybe it’s the epidemiologist in me, but I truly wanted to hear her thoughts.  Engage in a conversation.  After all, my husband was young, 39 years old when diagnosed with what used to be considered “an old man’s cancer.”  What I did not expect was her response, “We’ll never know and it doesn’t really matter. We need to focus on treatment to get him better.”   It became evident rather quickly it was not her job to ponder the possibilities of what caused his cancer; it was her job to make sure he received the best care possible and to watch over his safety through the treatments.   For that I was grateful.

As I approached the lady’s in pink, the words “it doesn’t really matter” from the physician a decade ago were as loud to me now as the walker’s thunderous clapping.  It dawned on me that with cancer we have stopped asking why and what.  We have settled in a very dangerous space – the acceptance of the disease as part of our lives. The common belief now is that cancer is conquerable, even curable.  The rock star cancer patient we see on billboards and in magazines denies or at least downplays the suffering that comes with the disease and in doing so makes it easier to avoid thinking too intensely about the causes.

But what if we never asked why a plane crashed or why clusters of people were getting food poisoning?  What if we just focused on treating those who survived the crash or the contaminated food without looking for and addressing the causes? Planes would keep crashing for the same reason and people would continue to get sick from eating the contaminated food.  So why do we seemingly, so readily, not insist on answers to the tough question, “what caused her cancer?”

What if each one of these persons walking for the cure insisted on finding out the answer to what caused their loved one’s breast cancer?  What if collectively we were not willing to accept “we’ll never know so it doesn’t matter” for an answer? I know what would happen.  We would force the medical community, scientists, government, politicians, non-profit organizations, industry, and the media to more openly and honestly engage in a dialog about the causes of cancer and, in turn, we would be in a stronger position to find the real treasure – prevention.

Copyright © 2012 Jeannie Moloo. All Rights Reserved.