Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “survivor guilt”

Jennifer’s Story

One of the first things that I wanted to do once I was done with my chemotherapy for Hodgkin’s Disease, was to find some way to “give back” to that which saved my life.  I never studied to be an oncologist, so that was out.  The American Cancer Society had been rolling out a relatively new program called Cansurmount.  Cansurmount was a “peer to peer” program that matched cancer patients by type of cancer as well as other factors such as age and gender.  The goal was to help patients deal with their illness by realizing that others had gone through it before themselves.  There was training involved which mostly involved learning to listen, listen real well.  Patients needed two things, one more so than the other.  The thing that cancer patients needed was to be heard by someone who understood what they were going through.  I know I personally dislike the expression “I know what you must be going through.”  No, you do not.  The second thing needed, is empathy, to be told the way that they feel is normal, and to be inspired by me, an actual survivor.

Having completed the training course, I was good to go.  In just a few short days, I had been given my first patient.  Her name was Jennifer, a 14 year-old student with Hodgkin’s Disease just like myself.  As I read through the profile, I thought to myself, “this won’t be bad at all”.  But then I got to the prognosis, which I was not prepared for, “terminal.”  I could not believe it.  Right from the gate, I was given a child who had nearly the same cancer as me, only she was going to die from it.  I had barely come to terms with my Hodgkin’s, and only recently celebrated my remission, but had to reign it in when I met with Jennifer and her family.

I met with Jennifer’s mother first to tell her what Cansurmount was all about, and then, who I was and what I had been through.  She never did ask me, how soon my Hodgkin’s Disease had been discovered to allow me to go into remission, when her daughter, only aged 14, would die from it?  There was not one visit that did not occur when the thought “why her, and not me?” did not go through my head, or wonder if her mother felt that way.  This is called “Survivor Guilt”.  It is something that I have carried with me over 22 years now.

My visits were weekly and lasted anywhere between a half hour to an hour.  Most of the times, it was Jennifer’s mother asking me questions, still looking for any kind of hope that things would turn out differently for her daughter.  Jennifer barely said more than “Hi” to me.  We just sat there, watching whatever television show she had on at the time.  This routine would go on for months.  At times, I would forget, that Jennifer was not going to survive.  She had not been told of her worsening condition.  She was only told of things when she was going through treatments or doctor appointments. 

She would celebrate her 15th and 16th birtdays.  For her condition to be terminal, this was taking a long time.  But there are different types of Hodgkin’s Disease and there are different types of growth.  Jennifer’s was the slower growing type.  For Jennifer’s 16th birthday, she had made a very unusual request.  Though she had not been in school for a very long time, she longed for her vo-tech education.  This was the year she was supposed to learn to drive the fork-lift.  I do not recall her talking about her prom as more treatments were beginning to take their tole on Jennifer.

By Jennifer’s 17th birthday, her condition worsened dramatically.  The family made the decision to bring hospice in and asked for my help to arrange this.  After all this time, all the visits, I was finally making a contribution to Jennifer’s care.  And then it was time to tell Jennifer that she was dying.  Her family broke the news to her, while I just sat there, tears welling up.  Jennifer talked about wanting to graduate from high school as the last thing she wanted to do if she could.  There was a brief moment of silence, and I took that opportunity to tell Jennifer and her family about the hospice program, the representative that would be coming, and what to expect from them.  In all the visits, Jennifer barely spoke to me, at least nothing that would have confirmed that my visits with her were nothing more than taking space in her living room, which now its furniture included a hospital bed.

“You’ll still come and visit with me won’t you?”  At that moment, I could no longer hold back the tears.  I was certain that I had meant nothing to Jennifer and here she was concerned that I would stop visiting her just because hospice would be taking over.  I promised I would stay with her.  A month later, Jennifer got a surprise, it had been arranged for Jennifer to graduate from high school, ceremony and all.  It was a moment that I will never forget, because with her fate just before her, she had given a smile that would last forever.

Soon after, her condition worsened and had to be hospitalized.  And then she let go.  Her pain and suffering were over, but it was on her terms.  She got to do the few things that she wanted to do before she passed.  Jennifer touched so many lives and is someone I have never forgotten.

I was dealing with several other patients at the time of Jennifer’s passing, but took her death so hard, that I needed to ask for some time to deal with my grief.  It would be unfair to my other patients, and I defnitely did not want my actions reflecting on them.

I returned to Cansurmount for several more years, and then the internet came along, and found that I could help so many more people, which is where I am today.  I participate in several blogs and internet support groups, have given survivor speeches, and held many one-on-one conversations with people.  I am hoping to see the day when all cancers are cured, but for now, we cannot forget about those who still must fight and make sure we meet their needs.

Learning To Relax

I have three main sources of my visible stress, only one of which I make public, though the other two are known by select few.  The other sources of my stress end up internalized.  Given a scale of 1-10 with 10 being the worst, my stress level is easily at 10 nearly 85% of the time.  The other 15% of the time, if I can get to sleep, there is a reduction in my stress.  I am not sure, because it probably depends on how long I sleep, if I get into a deep enough sleep, and what I am waking up to.

My doctors are more than concerned with this, because stress is not good.  There are any number of maladies that I could be facing from stroke to heart attack.  I am on several prescriptions all meant to help keep my stress down.  I see a therapist regularly for my stress (as well as survivor guilt issues).  Medically I do what I can to relax, but it is not enough.  And since I am not willing to give up my living, a job that I actually enjoy doing, I must find other ways to decompress.

There are common ways to relax such as meditation, yoga, and even jogging.  For me, I get through my work day with music.  I plug in the old ear buds, turn my Ipod up as loud as it will go, and I am off.  Yes, it is very loud.  But you know what?  I do not hear anything.  I do not hear gossip.  I do not hear complaining.  I do not hear bad news.  I am able to place myself in another totally different situation mentally.  This was huge during chemotherapy, during convalescing from my heart surgery, and many other medical times.  But at work, I need it to get through my day.

Norman Vincent Peale wrote about “positive imaging”.  This was a concept where you simply took your mind to the place that you hoped to be in the future.  In terms of a cancer patient, for me, I was done with chemo, hair had grown back, weight lost, and life had been back to normal.  I think that any time you take your mind away from your present stress, it can be relaxing. 

Deep breathing.  You want to talk about feeling differently without even moving?  I have seen the directions written differently, but the concept is to change your pattern of breathing which I believe would change your brain’s thinking.  Some exercises have you inhaling through your nose for a count of five, holding for five, then exhaling from the mouth for a count of five.  You could do 5-4-4 or 4-5-5, I would imagine any formula would work.  I do around ten sets of this breathing  technique which often helps to calm me down.

Exercising can do wonders.  Any movement with your legs, walking even with a quick gait, breathing in through the nose, and out from the mouth, will provide immediate results of relaxation. 

I recently did a post on how much my golden retriever means to me.  Simply all pets are capable of providing stress relief.  And with cats, even comic relief when a laser pen is involved.

Psychotherapy.  Unfortunately, seeing a “shrink” has such a negative connotation or stigma attached to it.  But I can admit that I see one.  I have a major issues with Survivor’s Guilt (from many incidents in my life), but she is also crucial for stress management.  I am not crazy.  I am not depressed.  But I am thankful to have her as part of my survival care.

Prescription drugs.  For me personally, this will be a last resort.  I have had the ocassional anxiety attack prior to a medical procedure, where I was encouraged to take something, but refused.  In general, I do not believe taking prescription drugs accomplish anything with eliminating the stress, as I say, “only hiding from it”.

Finally, I have found a new form of relaxation, martial arts.  I have certain limitations due to my physical survivor issues, so I believe that I am only going at half speed.  But the relaxtion comes as I am on the floor, concentrating one hundred percent on the techniques and forms.  If I do not pay attention, I will get waffled in the face.  My partners tell me that I do not seem as limited as I believe, and am fairly accurate with my moves.  But for at least that hour, I accomplish something that I have not been able to do to this point, relax.  I have totally eliminated the stress for that our, without medication, and hopefully enough that when the next day comes, my stress is at a lower level than when I left it the prior day.

I must reduce my stress.  If you doubt what stress can do, stay tuned.  I am going to show you what stress actually looks like and what it does to the body.

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