English - International Waldenstrom's Macroglobulinemia Foundation

A SELF-CARE APPROACH TO LIVING WELL WITH
WALDENSTRÖM MACROGLOBULINEMIA
b y Wanda Huskins, IWMF Member
“The oldest and strongest emotion of mankind is fear,
and the oldest and strongest kind of fear is fear of the
unknown.”––H.P. Lovecraft
I am driving at night along a dark, unfamiliar highway.
I can’t see ahead of me. What I mean is that I see only
a dark void. My visual field extends and abruptly ends
immediately in front of me. Despite the impossibility of
continuing this way, I seem powerless to pull over and
stop the car. Flashing before me are road hazards beyond
my control to avoid. I strain to see. I gasp in anticipation
of crashing. I veer left and right hoping to escape sudden
obstacles in my path. As I struggle to concentrate my focus
on what is up ahead, I’m invariably wondering, “Why is
this happening? How is it that I’ve found myself in this
surreal situation?” I scream out in anguish to my husband
who is sitting helplessly next to me, “Jeff, I can’t see
anything ahead!” I’m terrified, confused, and exhausted,
as I plead for him to help guide me.
At this point I abruptly wake up in a sweat, relieved that
this is just a nightmare. Soon I begin to realize the dream’s
significance. My life had abruptly become unrecognizable
since my Waldenström macroglobulinemia diagnosis.
Now most of my waking thoughts revolved around the
significance this diagnosis had and would yet have in my
life. Like the road hazards springing up in my dream, our
calendar was looking quite hazardous and chaotic with a
sobering array of upcoming cancer-related appointments.
I feared their arrival and braced myself for the worst. More
frightening still was what did not show up on my cancer
calendar. As in the dream, I was finding it challenging,
if not impossible, to proceed without seeing what was
ahead. My formerly ordinary and rather predictable life
was slipping away from me. Plunged into this uncertainty
I thought of a quote from Winston Churchill: “If you’re
going through hell, keep going.” After four years of going
through WM, three of which involved treatments, I’ve
learned that you do have to keep going.
Sir Winston humorously presented the problem and
the solution but was less forthcoming about the tools
needed to manage this march through the dark unknown.
The darkness ahead feels strange and menacing. It is
certainly unpredictable, creating for many fear and
distress in their everyday lives. No matter where we find
ourselves in the cancer continuum, we’re keenly aware
that there is nothing normal about living with cancer,
particularly a chronic cancer that has set up a permanent
residence in our bodies. Life with cancer as opposed to
living after cancer will be a different experience for us:
“What lies behind us and what lies before us are tiny
matters compared to what lies within us.”––Ralph Waldo
Emerson
In varying degrees, all of us have strengths to effectively
cope with the changes and fears brought on by our cancer.
Our personality traits in large measure will play the pivotal
role. Some traits, including openness and a generally
positive outlook on life, will clearly enhance effective
coping. The “laid back” attitude of taking and living
one day at a time is a strong asset to possess in dealing
with uncertainty. Also key is a flexible nature with the
ability to allow for adjusting plans or strategies as needed
while staying committed to a goal. Of course, a high
tolerance for stress, often coming from past experience
in handling life’s challenges, bolsters one’s resolve. An
important attribute to encourage positive coping skills is
a strong belief system that, be it spiritual or philosophical
in nature, ultimately leads to reflection and understanding
of our highest priorities. Also of huge importance is
the ability to ask for or accept help from others without
feeling that this is a weakness. In this list of traits we can’t
neglect intelligence, insight, and a sense of curiosity for
information and knowledge to help guide us. Researchers
are also discovering the importance of humor, albeit
at times “black humor,” as a personality trait offering a
deflection from our fears.
Most of us will find our cancer and its treatments to be
challenging even if we possess some, or even all, of
the traits outlined above. We arrive at this diagnosis as
adults with our personalities firmly developed into our
identity, and we are not readily amenable to change.
The good news, however, is that our behaviors, habits
and reactions are often learned responses within our
control to alter. We are all quite capable of acquiring new
coping skills, augmenting the ones we have, and assisting
with the improvement of our own well-being. The only
requirements are the desire and insight to find what our
own “self-care” should look like. Devising a self-mediated
care plan places us in a better position to directly manage
our fears and uncertainty.
To become and to stay informed about our own cancer
reduces some of that uncertainty and can improve our day-
A Self-Care Approach, cont. on page 19
18 IWMF TORCH Volume 14.2