Cancer – A Caregivers Story ;

Cancer is a thief that picks pockets during the day and overwhelms the front lines under cover of night like a horde of enemy soldiers programmed to kill, take no prisoners, show no mercy and surrender under no conditions.  The deadliest thing about cancer, its raw killing power, isn’t the most injurious or savage of its assets.  Cancers strongest asset is its ability to reap collateral damage outside the host that gives it life. 

This is not a rage against a cure that hasn’t been found, instead, it is a philosophical approach to understanding the very general label of ‘cancer’ and its impacts beyond what is measurable today with our crude macro instruments.  Some day, in the future, there may be an army of ‘anti-cancer’ cells that will render this current ‘cancer army’ innocuous, impotent and all together irrelevant.  Unfortunately, this is not a description of what will be, rather what is, where we are today, what the limits of our knowledge as a human race afford us in relation to our finite existence.  Science, medicine, technology, mathematics and engineering will continue to work together as a unit to ultimately defeat cancer, one day.  Families, individuals and patients are left to deal with what it is today.  While the studies continue to offer hope for an extended life after diagnosis most have yet to offer a cure. 

The months following a formal diagnosis of cancer are full of treatment planning sessions, specialist appointments, test after never ending test and daily battles with insurance companies.  For the patient I can only imagine the difficulty of dealing with the uncertainty of the illness. As a caregiver I know first hand the exhaustion that comes as a result of managing these issues.  Life as you knew it, even a day before diagnosis, ceases to exist.  The new life you are thrust into comes with tests of your patience, marriage, friendships, physical strength, mental fortitude and resilience.  Caregiving is a bit different for everyone however here are a few items/tasks/nuggets of knowledge in this new role:

  • Keeping track of the daily answer to the question ‘How do you feel today?’ for trend analysis at the next appointment
  • Consoling the loved one as the fear pours like a river from their soul
  • Listening to their ‘stream of consciousness’ thoughts without reaction only silence, love and care
  • Coordinating appointments so no two overlap with ample time to reach location using the least amount of energy expenditure for the patient
  • Balancing your own job(s) with medical benefits while attending every possible appointment
  • Handling the finances so the loved doesn’t have to worry
  • Keeping a list of questions at the ready for each test result or specialist visit to ensure the home care plan is on track
  • Battling with the insurance companies to obtain the care the patient is due even though the representative on the phone has never dealt with a complex case before
  • Learning to wear two headsets while working on a conference call for your job in one ear and talking with the insurance company in the other … All as you ensure you are muted on the right call at the right time
  • Realizing that in order to accomplish these things you need a self care plan
  • Accepting that developing a self-care plan is not a selfish act
  • Understanding that part of a self-care plan includes breaks in the day to allow yourself to grieve/refuel/revive
  • Knowing that sometimes your lunch might best be had in your car, alone, at a grocery store parking lot while listening to your favorite radio station
  • Love the journey you are on, for one day it will meet another fork in the road and your path may change
  • Remember to savor every detail of every sunrise, sunset and night sky – these memories are your strength in the darkest of times
  • Know that even in the quietest of moments you are not alone – caregivers are all around simply cloaked as you are in the background of the story of a disease called ‘cancer’
  • Remember you are courageous, strong and resilient – accept the tools you have
  • Consider that what you are moving through may one day help someone else
  • Look for the helpers

Caregiving is a journey, cancer is a diagnosis, self-care is the means by which the journey is made a little easier for all involved.  I never thought I would, at the age of 44, be dealing with a spouse diagnosed with a rare and life threatening cancer that would result in a stem cell transplant, lifelong chemo infusions, the development of congestive heart failure and a brain tumor only 3 years later.  I never imagined the energy sucking power the chemo drugs would have on his body and mind.

My personal journey, as the driver in this Uber like environment, has demanded a renewed dedication to the love that drew me to my husband so many years ago. It is this love that I rely on to drive further through this process. As every family caregiver knows, while the patient is their focus 98% of the time, they still have to balance their job(s) as typically (in the United States) how treatments are barely afforded through employer sponsored medical insurance. Imagine balancing the 50-60 hours required to keep your standing with your employer strong (maybe then you will get that incentive and a raise each year to pay down the portion of the chemo bill the clinic keeps calling about), taking on a side gig/second job, dealing with the often confusing red tape that creates the invisible structure between provider and payor companies all while handling the fallout from the emotional ups and downs of the loved one suffering the effects from cancer and treatments.

Caregivers face many unique challenges throughout their lives both during and after the conclusion of the process. Nothing prepares a person for the war that ensues following diagnosis. I believe the most equipped and successful people in a caregiving role are those whose mind is fully open to receive information even if they are deemed experts in a given field. The most important tool of a caregiver is their open, curious mind. A person who asks questions without any assumption as to the ‘right answer’ versus the ‘given answer in the moment’ will be able to better manage uncertainty and extrapolate from incomplete data in a more efficient manner. This person will also realize a lower stress response to answers that seem incorrect therefore they are more successful in pursuing the correct information more quickly.

Not the end….not the beginning….only in the middle……more to come – Aver Coraggio –

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