Balanced Living with Cancer

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.

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.

I was at a gathering the other evening talking with a friend of one of my good friends.  She knew nothing of my life experience living with cancer and so I found the conversation particularly intriguing.  She is young, mid-forties, and healthy and vibrant with two children, a daughter in college and son about 13.  We were talking about her autistic son and how health insurance does not cover many of the recommended traditional treatments, for example speech therapy, because they are viewed as either experimental or not medically necessary.  She and her husband own their own business, a winery, and the cost for the family’s health insurance is extremely high given their son’s autism.  They are weighing continuing with their health insurance or stopping and saving the monthly premium.  Given how little insurance covers their son’s treatments, they are leaning toward the latter.  It was apparent the topic was distressing her.  When I asked her why she keeps the insurance she leaned in and whispered,  “in case one of us gets the big C.”  As she stood there, pristine in her composure, wearing a beautiful maxi dress, her long blond hair draped down the side of her shoulders, I thought to myself,  “Oh, the big C.”

The words repeated in my head slowly becoming a mantra taking hold and touching on every nerve in my body.  I felt myself shifting my weight, moving to cross my arms, but then stopped as an old saying came to mind, “Fear makes the wolf bigger than he is.”  I was reminded, as difficult and challenging as it has been living with the unknown that comes with cancer, fear of getting the “big C” can be just as terrifying.  I thought of my children.  I wondered, as I have many times in the past, what fears, anger, guilt and uncertainty would come to them growing up with their father having cancer, or will their feelings be balanced with the honesty and clear-sightedness that can come from lived experiences.

“If you can afford it, it’s probably a good idea to keep your health insurance for a number of reasons,” I responded.  “We’ve found that when we’ve needed ours, we’re usually very thankful we have it.”

Copyright © 2011 Jeannie Moloo. All Rights Reserved.