Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Closure – I’m Sorry That It Took This Long


I am grateful to anyone who is charged with having to take care of me as a patient.  It is not that I am a bad patient to deal with, quite the contrary.  Hardly a peep is ever heard out of me.  Complaints are never made about discomfort or pain.  While hospitalized, I do not hit the nurse “call” button multiple times in an hour.  But, there in lies the issue.  Nurses and technicians do have hearts.  They do care about their patients.  And I am certain that they are not happy when a patient lets themselves get so far into a level of pain and discomfort before asking for assistance. 

But a lot of good writing about my gratitude for my caregivers does here.  Spoiler alert – except for a couple of years ago, it had been two decades since I had seen the two caregivers that saved my life, literally, saved my life.  There was one thing that I did not do in my excitedness to be finished with my treatments – say “thank you” to Noreen and Brenda, my radiation tech and my oncology nurse.  These two individuals deal with one of the most horrible illnesses known to man, often resulting in death.  But they also have successes, of which I am one.  But did they know that?

So two years ago, my twentieth year in remission, or some consider cured of my Hodgkin’s Disease, I set out to find the two women responsible for saving my life.  The odds were against me, as I only remembered their first names, but at least that was a start.  I found Noreen no longer at the hospital I was treated with radiation, but rather at another hospital in another network, still in the same field, just no longer directly as a technician, more in line with computer support for the newer technology.

Brenda was a bit more challenging to find.  She had retired, and no one from the doctor’s office would release any information to me.  So, I left them my name and phone number and an explanation of who I was (imagine, I had survived longer than any of their employees stayed working there).  A phone call from a nurse who had worked with Brenda had called me with good news.  Though retired, Brenda was still involved with cancer support, just in the hospital environment.  She was serving as emotional support, and did this three days a week.

I was set.  I tried to remember what it was like the last time that I had seen each of them.  I definitely remembered what they looked like.  Wow.  I had pushed those memories so far back because all I wanted to do was forget them once I was done.  But as I thought about it, not only owing my life to them, they cared for me.  They cared about me.  Together, they were the reasons that I stayed in that network for my treatments.

It was the following week, and I was headed to Allentown for physical therapy.  Both women were approximately ten minutes away, in each direction.  Since the hospital where Noreen was closest to where I was doing physical therapy, I stopped to see her first.  I arrived at the reception area of the radiation therapy department.  I clearly caught the receptionist off guard the way that I requested to see Noreen.  I was refusing to give my name (I don’t know why), just told the woman to tell Noreen that a former patient of hers has come by to see her.

Noreen came through the double doors, and less the white lab coat, I knew it was her.  She looked like she had seen a ghost.  I asked her if she remembered me and she did.  Actually it was due to the unusual circumstance of the first day of my radiation treatments, the linear accelerator broke down with me on the table.  Immediate flashbacks to Bill Bixby on the television swelling and turning green into the incredible Hulk.

We spent the next twenty minutes or so catching up.  She told me of her new work with her old field and then went on to tell me all the advances that had been made in raditation therapy since my day.  And then she heard what I had been through with the heart bypass surgery, and all of the other long term side effects I was diagnosed with from my treatments.  And tears fell from her eyes.  “We had no idea.  We had no idea what would happen to you and other patients with you.  We just knew it worked.”  I told her that I had no regrets, and how good my life had finally become.  And then I did what I should have done twenty years before that, I told her “thank you.”  We hugged, and then parted ways.  If I was going to get to see Brenda, I needed to hurry as it was getting late.

The office that Brenda has worked in when she treated me was still standing, but the oncology practice had moved across the street, to a wing built onto the hospital.  I got turned around quite a few times, but found my way to the cancer floor.  I was led by the recepetionist back through an office, weaving through cubicles.  The last cubicle on the right was occupied by an elderly woman with a perfectly frosted hair style, no chance of mistaken identity, this was Brenda.  I knocked on her cubicle wall and she turned around.

There was that motherly comforting smile that got me through nine months worth of Fridays and treatments.  Brenda was now volunteering to work with cancer patients with personal issues.  She was perfect for that role.  She asked how I had made out all of these years.  Eventually we got to “family” and told her how I wish I had followed her advice when I was younger, but I did have my family after all, with two beautiful daughters who I had adopted.  I told her that I am now seen at Memorial Sloan Kettering in the Survivorship Program to follow up my long term needs.

Since I was in the hospital visiting, I asked Brenda if John (my counselor when I was going through treatments) was still working in the hospital, and he was.  So Brenda took me downstairs to yet another reception area.  I saw a lot of familiar faces and then out came the gentlest giant of a man, John.  I did not get to spend much time with him like I did with Brenda and Noreen, but I did get to ask him about the first counselor I saw before I began my chemo.  Her name was Illona, another great mother figure to me.  Sadly, John informed me that she had past away several years ago, in the cruelest of ironies, from cancer.

One final thing to do before I ended this overwhelmingly emotional visit.  I thanked each and every one of them for giving me the life, in spite of the late side effects I deal with, that I truly love and cherish.  I do not know if I will ever see them again, but I made sure they knew, that they did cure this patient and I was appreciative and thankful for that.

Noreen, Brenda, John, and Illona, thank you.

The “Benefits” Of A Union


If you want to start a divisive conversation with anyone, state you opinion on labor unions.  The chasm between supporters and opposition is huge.  There is hardly any acknowledgement of real estate between either side.  You are either for them, or against them.  Both sides often present skewed information to prove their value and refute effectiveness of the other side’s arguments.

I am not going to get into the middle of that discussion either.  I do have an opinion on labor unions, but that is not the purpose of this story or the blog in general.  Instead, I want to talk about one of the good things to come out of union membership.

From the day I was diagnosed with Hodgkin’s Disease, I became a “prisoner” to my current empolyer.  As with many health challenges, once you become a liability with your health, insurance companies do not want you or your premiums that you pay.  While they do pay out claims, they are in the business to make money, to gamble against you and your health.

The first job that I ever had that gave me health benefits was Wagner Appliance Parts, a “family” type business in the Allentown area.  With the help of a good reference, I was hired by Jeff Wagner.  Two years later was when I was diagnosed with my Hodgkin’s.  It was also at that time, that my employer realized what he was not getting for his investment.  Wagner’s was not a union business, so benefits were at the generosity of the Wagner’s.  And for years they felt as if their employees had good health coverage because why would their agent sell them anything less.  But with my diagnosis came a sad realization for Jeff, that our plan had many exemptions and limitations that could have profound impacts on diagnosis and treatments.  The night I told Jeff of my diagnosis, and the doctor’s plans due to my health benefits, is when he called his insurance representative and upgraded our coverage.

For three years following, I was an employer there.  But an opportunity came up to operate my own business/franchise, something that I had been denied in spite of my qualifications, or the fact that management constantly had me training the future managers.  There was going to be one catch.  I would not be offered any benefits because of the prohibitive costs.  But my career had plateaued and this would only be temporary to give myself experience.  Five years went by, had it not been for the HMO my wife had.

A break came when I landed a job with an entirely different company, a major, international firm.  I would be starting as a custodian, the lowest scale of the local union.  But what the union offered in health coverage was more than I could ever have hoped.  The great thing is, it could not be denied.  In the last five years, I have had my share of claims paid and I would have been dropped long ago.  But with this group policy, it cannot happen so I am told.

The economy and the new universal health care are creating issues which my opinions in these matters are not what this post is about, but rather reveal what employers are doing to skirt around having to offer benefits from under-enrollment, cutting hourly workers below full time.  As far as I am concerned, you must fight to keep whatever coverage you currently have if you are happy for it.

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.

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