Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Disease”

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.

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.

Time Travel – Changing History


H.G. Wells did it.  Sam Beckett did it.  Bill and Ted did it.  Superman had to do it for Lois.  Even Bart Simpson has done it.  Time travel.  All had the desire to go back into time to either research or alter time.  Each had their own mode for making the journey – an actual time travel machine, Ziggy the computer, a phone booth, a cape, and as a parody of “Back To The Future,” a DeLorean complete with Christopher Lloyd.

The concept is simple.  Go back in time.  Fix what needs to be corrected.  Come back to the future.  Of all the time travelling media, Sam Beckett in Quantum Leap was my favorite.  You see, when you change the past, you change the present and the future.  Beckett had to be careful so that he only changed the history of the person he was sent to help.  And there were times when it was extremely personal for him, like saving his wife, or even stopping this project which he found out eventually was much bigger than the invention that he created.

There is a different way to change history though, without going back through time.  We do it as children, and we often live through it as adults.  We study history.  The idea of studying history in one aspect, is to not repeat it.  Wars.  Space Shuttle disasters.  Tough economical times.  Medical crisis.  We study the examples so that we learn from them, and do not repeat them.

When we are born, our path is set.  There is a natural progression to aging, infancy to toddler, toddler through child, child into puberty, then to adulthood, and senior status.  And there are things that we know, are likely to happen to our bodies as we get older and our bodies get tired.  But just as travelling back into history to “fix” something, for me personally, the cancer diagnosis being the time traveller, forever changed my present and future.  There are bad things that came of it, but there are also good things that came of it.

For example, when I went through the radiation treatments, there were some things that were known that could happen as a result (called a side effect), but there was so much that was unknown.  Of course I knew what could happen.  Mr. McGee could make me very angry and I would go through my wardrobe very quickly not to mention look like I belonged on a can of vegetables (Incredible Hulk reference for those that need it).  Well, I did get a lot of radiation, too much in fact.  At the time, it was what worked, that is all researchers knew.  In today’s treatments, doctors know that they can use much less and by that, I mean ALOT less and have just the same effect or better.

So as I said, I received too much radiation, amounting to four times the lifetime allowance of exposure.  There are many who work at nuclear power plants that are not exposed to what myself and others were exposed to.  The sad thing, I know plenty more people who were treated with much more radiation and different types, like Cobalt.  We have all been told as children that radiation is bad – “don’t stand too close to the TV”, “don’t stand in front of the microwave”, “cell phones cause brain cancer.”  Not only does it treat cancer, and cure cancer, but it can cause cancer.  That is why if you are smart and able, you put sunscreen on your body.

Well, just like on the outside, when you get sunburned, with radiation treatments like I received, the burns were on the inside as well.  To my knowledge, it is something that I will always have.  So the radiation and chemotherapy start doing damage to my body, inside and out, which gradually gets worse over the years.  To understand, if you drive a car that has one tire that is not inflated properly, do you think that will affect the other tires?  The overall performance of the car?

As it is, that I believe about my body.  With the first lymph node that was removed and biopsied, so my body had to adjust.  With the staging laparotomy, my spleen was removed leaving my body challenged forever against infections and contagions.  When my heart bypass surgery was complete, blood was flowing at the rate once done before, my body parts not used to.  The list goes on.  My body’s natural physiology was changed back in 1988.  As far as I am concerned, everything that is happening to me today, is because of the things that happened from that time on.  And so far, this has been confirmed.

So given the chance, would I go back in time?  Knowing what I know now, would I take the opportunity to change my mind to any of the procedures, or even to allow the doctors to treat me?  Given the two choices that I had, death or most likely cure, how would today be different for me today? 

Hodgkin’s Disease has been one of the more curable forms of cancer for decades.  Treatments have gotten better, safer.  But would I have had that much time to wait decades for a cure that would not have had the impact on my health today?    I have two very very good reasons to not even entertain that option. 

Mad and Em 12813

All I can do now, is make sure that any more decisions do not give me cause to want to go back in time to correct a regret.  Then again, what if I already had gone back in time?  What if…

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