Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Survivor Guilt


The following is a link to a newsletter article that has been published in Memorial Sloan Kettering Cancer Center’s quarterly newsletter for cancer survivors.  This was my second submission.  I am copying the story here, but for it too look really cool (and of course, see the other topics that are discussed) make sure you check out the link.

http://www.mskcc.org/sites/www.mskcc.org/files/node/4333/documents/bridges-spring-2013.pdf

Question:  I recently lost a fellow cancer survivor and am experiencing survivor’s guilt. Do you have any suggestions for coping with these feelings?

Answer:  First, please let me express my sincerest sympathy for the loss of your friend.  Survivor’s guilt is a common and often underestimated feeling experienced by both patients and caregivers. As a survivor or caregiver, we are expected to just be grateful and simply move on. Do not ask questions. But we do.  A year after my own treatment ended, I trained and participated in a peer-to-peer program with the American
Cancer Society called “Cansurmount.”  The concept is to match survivors of cancer with patients who are struggling with their own diagnosis, treatment, or survival.

My first patient was a 14-year-old girl who would eventually pass away from the same cancer that I had, leaving me to ask, “Why her and not me?”
As someone who was fortunate to have beaten the odds, it was not long before I found myself facing an unexpected and insurmountable wall
of self-doubt, which I refer to as my survivor’s guilt. Perhaps survivor’s guilt is a way for our hearts and minds to remind us of where we came from, and what we have endured. The important thing to realize is that this feeling is often overwhelming, but can be alleviated.

With technology, I have been able to widen my experience and knowledge of cancer patients and survival. I have participated in Internet support
groups for over 15 years and finally accept that with 22 years of survival behind me, I am a long-term survivor.  Surviving also means that I have
experienced loss. In just over a decade, I have said goodbye to well over 100 friends and relatives who were not able to achieve that remission.

The question I still ask myself is always the same, “Why them and not me?”  But what gets me through each and every day is knowing that my survival mattered to those who have passed.  My experiences inspired them just as theirs inspired me. There is no way to know the reasons that some survive and, sadly, others pass. The answer can be as simple as the one that comes from a parent when a child asks, “Why?” and the parent responds, “Just because.” It is cruel and it hurts.

It matters that you are here now and asking this question because at some point someone else will read your question when they are questioning
their survival and know others have gone through a similar experience.  Reach out for help. Support from others with personal experience or
professional knowledge (like the staff of the MSKCC Counseling Center) is essential to help us understand that what we feel inside is common and
expected, and can be overcome.

Waking Up Late


Normally in my house, there is no such thing as sleeping in.  With a seven and nine-year old who have the internal clocks of farmer Brown’s roosters, on a rare day off from work, I am lucky to get passed six in the morning.  My daughters know there is a lot that we can do in a day, and they do not want to waste a minute of that time.  But as many parents know, let it be a school day and you have to drag children out of the beds, still clinging to their bedspreads as you load them onto the school bus.  Except today.

It happens once every so many years, I woke up late this morning.  But instead of just soaking in the “why” and enjoying it, I jumped into hyper mode, blowing right passed my daughters who were in awe of the mid-March snowfall, clearly anticipating a snow day off from school, maybe which would translate into a day off for Daddy from work.

Unfortunately, that is not how the day went.  Much like the expression, “woke up on the wrong side of the bed,” starting off my day, which is fairly routine (I could do it in my sleep), there are things that I do naturally and planned.  I skipped past morning meds, school backpack prep, pet feeding, and lunch preparation as I raced to get to work before being late.  I ended up late anyway, but feel from the harried state, set in motion a chain of events today that just like my morning began, sped and spiraled out of control.

Oh sure, things happen.  My waking up late in the morning has no more an effect on events of a day, any more than I can control the sun rise in the morning.  But my reactions to everything I am certain would have been different.  Additional work duties to an already tardy start of the work day, only kept me behind on my work load.  The quick pace emotionally left me concerned that I was not concentrating enough to make sure the rest of my evening would go as planned, nor would it.  I was contacted about a work issue, and then additional news came about someone close to me dealing with cancer waiting on the start of treatment that I was not prepared for.  Nothing like a little late evening politics to round out the night, and I am ready to start off tomorrow morning, on time, and a little slower of a pace.

Oh Hell, who am I kidding?

A Body’s Betrayal


I am only on my third family physician in forty-seven years.  My first doctor died while still practicing medicine in his mid 80’s.  My second doctor retired.  I do not recall my health issues in great detail with them as my doctors.  But my current physician (and technically, her spouse who practices with her counts as my third doctor as well) knows me for being the kind of patient who only seeks out care when things are no longer tolerable.  Or at least I used to be.

Perhaps the most serious ailment that she had to deal with me, was a strange blistering of my skin.  I had been trimming hedges and pulling weeds, and evidently had come in contact with poison sumac which was far worse than poison ivy.  As I entered the office, I heard the receptionist comment, “tell Dr. J that Paul Edelman is actually here.  This has to be serious.”  Prior to that, on average I was only seen for annual and seasonal allergy shots.

For most of my life, my body has been very reliable.  The only time that my body had disappointed me was when I was diagnosed with Hodgkin’s Disease.  My body had betrayed me as I was told that I had cancer.  The next eighteen years my body had returned to normal, and so did my appointments with my primary physician.

But over time, I had come to know many other cancer survivors who have to see doctors more frequently.  The majority of them seeing primary care level doctors who many times end up stumped as symptoms and testing do not necessarily make sense for the average healthy individual.  What happens next, is the patient has a pretty good chance of being diagnosed as hypochondriac.  No matter what gain cancer survivors have made in care, seeing is disbelieving because it just does not make sense.  But if the patient is fortunate enough to live near a long term survivor clinic, a cancer survivor has a better chance of finding an advocate, one that will not treat the survivor as a hypochondriac.

That is right, I said a hypochondriac.  Many of us have grown up hearing that word before, referring to someone who believes that everything is wrong with them, and frustrated that the doctors can find nothing.  This is a situation that unfortunately is all too familiar to the cancer survivor  of a decade or more, who has not been followed up by more than a primary care physician.  An average healthy 30 year old will not really draw alot of attention for health issues, because there may be no history of concern.  But an average healthy-looking 30 year old will give off that same appearance.

And just as my original diagnosis of Hodgkin’s Disease was overlooked for a case of the common cold, so can issues related to the extreme treatments that were used on us so long ago.  Bodies of long term cancer survivors once again find themselves having their bodies betray them again as doctors attempt to use normal methods to common symptoms that should have typical responses.  But we cancer survivors do not fit the textbook.  Not just my body, but so many others’ bodies, betraying us all with our unusual symptoms.  Because the diagnosis is not obvious, we feel we are hypochondriacs, often times by our own tongue.

But then a major event hits, like a destroyed artery that needs to be bypassed, and the world of cancer survivorship begins to turn.  Up until recent weeks, the betrayals by my body had all been physical.  Two weeks ago, it has possibly become mental.  My mind is taking away the last thing that I hold in total control of my life.  I am losing my ability to internalize everything that I take on.  My body is betraying me once again.

 

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