Balanced Living with Cancer

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 emailed asking how he could help his best friend whose wife was recently diagnosed with breast cancer. His friend has two young daughters.

The email

“The wife of one of my best friends was just diagnosed with breast cancer. I know how difficult the whole journey will be for his wife Deb, but also for my friend Mike who is trying to hold his family together as you did. 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.” (Printed with permission and names changed).

My advice

During the throws of diagnosis and initial treatment, your friend and his wife are most likely hunkering down, in disbelief, shock, and in full on fight mode. I’m sure local friends are rallying, but that typically lasts for a short time (compared to the duration of some cancers), maybe a few months. Eventually, the attention will fade as the couple’s cancer story becomes old news.

When the initial shock and awe calms, your friend’s spouse will continue to receive regular inquiries and support from doctors, nurses, friends, and family. Your friend is also being asked regularly how his wife is doing.

When a person is diagnosed with cancer, we often focus our energies on the patient and overlook the impact on the Well Parent™ and the children. We’ll ask the healthy parent to let us know how we can help, not realizing they don’t have the time or energy to figure out what help they need. The Well Parent™ is often on autopilot, or in a fright or flight state of mind, juggling many tasks at once. For them to take a few minutes to stop and think how you could help is a luxury in their world.

Don’t underestimate the power of friendship

The urge is to feel you need to be physically present to help your friend through his spouse’s cancer. Don’t underestimate the power of friendship. Even if you live six states away you can provide tremendous help by checking in on your friend via text, phone, or email. Ask them how they are doing. Get them to open up and talk about their feelings, fears, and concerns. Out of habit, they may talk about their spouse’s condition, treatments and procedures, but stay focused on your friend and their feelings.

Ideas on how to help from a distance

Reach out on a regular basis – text, email, or phone

Ask how they are doing

Listen openly

Don’t be tempted to solve their problems

Even if you live six states away, you can be a critical part of your friend’s support system through this challenging time.

Chronic illness can be a great place to compete without showing it. Who’s calling the shots, the patient or the caregiver? The ill spouse or the well spouse?

There is terrific power in each role – the caregiver and the patient. If the caregiver overplays their role, the ill person can feel more anxious and more disabled, giving the patient permission to curl up and sit. If the patient overplays their role, the caregiver takes on unnecessary tasks impacting their health and their ability to be an effective caregiver. For both the caregiver and the patient, balance can be a tough line to hold.

On the other hand, it’s terribly difficult to sit and watch your spouse struggle with discomfort and risk a fall to carry a plate to the kitchen counter.

Finding Balance

Often the ill or disabled person doesn’t know what they can and can’t do until they try. Let them try and fail and then let them ask for help. Jumping in and doing it for them, before they have tried or asked for help, whittles at their independence and creates the polarizing dynamic that often happens when a chronic illness hits a family.

As my caregiving role evolved, I found myself doing far more for my husband than necessary. And by doing so, I was slowly stripping him of his independence and creating unnecessary angst for myself.

Letting Go

Helpful advice I received half way through my caring journey: “Don’t do things for your ill spouse that they can do for themselves.” For days after receiving this advice, I found myself acutely aware of how I was assuming more responsibilities around the house and for my husband than I needed to.

As the Well Parent™ we must move in the direction of letting go, even if it means sitting with our mouths shut and listening for the plate to crash to the floor. It’s not easy to do, but to survive the long haul it’s critical.

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.

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.

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.

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