Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

Role Reversal – Taking Care Of A Parent


A parent’s worst nightmare, having to care for a child for whatever tragic situation, cancer, accident, illness.  And then the ultimate, the loss of life because of the complications.  At funerals you will hear a phrase “a child is supposed to outlive his parents.

Last week, my father was officially told that he has lung cancer.  Over the last week, he has had several tests done to determine staging (how bad the cancer is and where located).  Emotionally, he is worried about two main things, one, care for his invalid wife – my dad is her caregiver.  And then of course, there is the fear of dying.

It is an early morning appointment, 7am.  My employer already tolerates me with frequent absences for my own health issues, to attend appointments in the care for my wife, and now will add for this.  Up until now, both of have held it together.  My defense mechanism is doing what it always has, switched to auto-pilot.  My dad, is almost in an acceptance mode.  There was one moment when he almost seemed to look for a deal, if he successfully quit smoking, which he is still dealing with.

My dad does not have any desire in technology, so other than his cell phone, that is as far as he will go.  But during this crisis, he probably wished that he would have access and the ability to use a computer.  So when the doctor’s office gave him information to receive notices via email, and be able to check on some of his records via the internet, he simply had everything referred to me.  On Friday, he had asked me if I had looked into his record, which I answered honestly that I had not.  That was actually kind of a hint that he wanted me to check if his scans were in that would tell how what stage his cancer was.  With several days until his appointment, I encouraged him to wait until then.

Then was today.  My dad and my stepbrother were waiting at the hospital by the time I had arrived.  We walked into the atrium waiting for my dad to be called in to be registered.  We entertained ourselves with small talk as anything medical made my step-brother nervous.  We were called into an exam room which was fairly small, definitely not large enough for the three of us, and five doctors to be in.  But the purpose for being put in here, was to put my dad, and my step-brother and I at ease.  Sure, the nurse took my dad’s vitals, but she also offered him some coffee, asked if there was anything else she could get him.

The hospital social worker came into the room then.  She explained the resources available to her, and that she would be available or how to reach her, should my dad, or any of his family have any emotional needs that needed to be met.  I expressed to my dad, while he is a fairly reserved and self-sufficient person, meeting this counselor was going to be one of the most important people he will meet during this process.  Most importantly, she was going to be another advocate for him.  If my dad was feeling uncomfortable about bringing up a topic with the doctor, having an issue with a hospital bill, pretty much any issue, she would be willing to help and guide him through whatever steps would be necessary.

Just then a nurse opened the door and said that the doctor was ready for us.  We were escorted down the hall into a conference room.  Wow.  It was not just the five doctors, but a total of nine staff members, all to make sure that my father understood all of his options.  The group had been meeting while we were waiting, discussing all of the options available to my dad, and what would be best.  I remember my diagnostic and prognostic stages and nothing even came close to the efforts for my dad.  It was so impressive.

My dad’s pulmonologist began the meeting, by informing us of good news.  The tumor was isolated to just the one particular spot.  There were no cells anywhere else, the cancer had not spread, this meant Stage 1, the best case scenario.  The bad news was that the best recommendation was not what my dad wanted to hear, surgery would be the best opportunity.  The concept of radiation therapy, or a combination of radiation and chemotherapy were explained as possibilities, but surgery would present the best opportunity for a cure.  He would end up losing half of his lung.

We did hear from the head surgeon who had address my father’s needs as far as dislike for the original surgeon that he had met, which basically came down to bedside manner.  But the chief assured my dad that another very qualified surgeon would be able to do the surgery.  We were introduced to the radiation oncologist, just in the event, further down the road, radiation therapy would need to be considered.  And then we met the oncologist that will be dad’s for the rest of the journey.  But what was more important to my father, was that the pulmonologist would stay involved.

I assured my dad, that Dr. K would remain inolved, that he was only a phone call away if he had any concerns or questions.  But for all purposes and plans, he was being turned over to the oncologist and the surgeon.  Dr. K would see him again in the near future as follow up, but of course would make himself available if my dad requested him.  This part was huge for my dad to hear, as he expressed extreme trust for this doctor.  And that is a crucial thing to have in your arsenal against cancer.

So now that the diagnosis, stage, and treatment plan had been decided, there were preliminary things that needed to be checked out before the surgery could be done.  Most importantly, confirming that his heart would be able to take the procedure of losing part of his lung.  A visit with his cardiologist has confirmed that something is of concern with his heart at this point.  Future testing is being done to see exactly what it is, and then it will need to be determined  if it needs to be taken care of before, during, or after the lung surgery.  What is not the ideal situation however, is delaying a procedure that right now is confined and has not spread.  Timing is definitely a critical factor.

Fortunately, my father’s head is in the right place.  He understands what has to be done.  He has faith in those that will be responsible for saving his life.  He is going through some normal reflections that all cancer patients go through, “what if’s” or “what went wrong”.  Another holiday is coming up, and as I have written before, I have really grown to dislike holidays for this very reason.  But my dad started a tradition years ago, by wanting to get his children and grandchildren together on Easter.  It is the one holiday that I promise him.  This year will be no different, but definitely as important if not more so.

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.

Why Paul’s Heart?


Why “Paul’s Heart” and why now?

I began “Paul’s Heart” as a step to writing a book, about what, I do not know.  As you can see, I am trying to keep all my options on this blog.  Perhaps, just as important, what I am trying to write about, is why?  I believe that some how, if I can reach even just one person who has gone through similar an experience like I have, or perhaps even inspired by someone who has had to deal with for so much.

But what if that person has no way to express how he or she feels.  I am hoping that this blog does just that, give everyone a voice.  By recognizing me and my limitations, they know that they will take care of us all.  I am laying it all out there.  It is a huge risk on my part because of employment, insurance, and just plain mean people.

However I am hoping that if that time should ever come that my health issues result in a bad judgment against me, as long as my blog has helped one person, then “Paul’s Heart” has been worth it to me.  If you are that one person, I am willing to be your voice.  I am willing to stand by you and help you find the care that you need.  I am willing to offer genuine encouragement and tell you it is okay when you do not want it.

Post Navigation