Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Lymphoma”

Cancer Does Not Discriminate

Back in 1989, as I walked through the hallway of the 9th floor at St. Luke’s Hospital for the first time as a cancer patient, the first lesson I learned was that cancer does not discriminate. Whereas early in my childhood, and mainly because of stereotypes that cancer created, it seemed that only certain people were diagnosed, and died from cancer.

Within minutes, I would see the widest of ranges in age of patients, from as young as two, to patients in their eighties. I saw men and women, people of all ethnicities. I would be willing to be also, that it did not matter if you were a good person or a bad person. Short and tall, rich and poor. It did not matter.

It was after those first steps on the cancer floor, that I had it in my mind I was going to be my cancer, Hodgkin’s Lymphoma. But it also became a moment that would change my thought process. After seeing the various patients, and in their various states, from that moment on I no longer gave myself the opportunity to feel sorry for myself, to allow myself to feel or acknoledge any pain or discomfort, physical or emotional. Someone was always going to have it worse than me. My situation was going to be temporary. This was thinking was going to be an issue for the rest of my life, and it is, often in a horrible way.

You see, no matter what the pain or discomfort, it does not take away from the reality, that it is real. Your pain, my discomfort, someone else’s ail, they are all real, and all deserve the proper attention. Yet while for the most part, I appreciate being able to be referred to as a long term cancer survivor. But at the same time, my heart mourns for Jennifer (see Jennifer’s Story on this blog page), and now my heart completely mourns for Michael. My thoughts begin to be dominated by a three year old neighbor battling a cancer that just a few years ago, took my stepsister’s life with her second battle having survived the first time for more than 30 years. I worry about my dad who just turned 70 as he worries about his cancer surviving.

Cancer does not discriminate. And even if it did, I do not know if that would help to make sense as to the “why” it has to happen. All I know is that it hurts. Every time I must say goodbye who has come into my life, it hurts. That is why I participate in fundraisers like the Relay For Life, Light The Night, breast cancer walks. Money cannot be the reason that we continue to lose someone. We need to find the cures, for all cancers, and then prevention.

Turning Things Around

As a rule, I am generally a positive person. I have to be. It would be too easy just to be swallowed up by all the negativity in the world whether it be the news on the television, co-workers, or even family and friends. The “deck” has been stacked against me my entire life, but I always found a way to get through whatever challenge was thrown my way. No matter the challenges, being bullied in school, cancer, heart surgery, and now in the later stages of my second divorce, I am always able to find my way through, “rise up from the ashes like a Phoenix”.

At the age of 48, it is time to stop living challenge to challenge. I have always had strong faith in a supreme being (I am respectful to all religions which is why I worded it that way) so that has never been an issue. Physically, as the school bullies found out, I can take a pretty good beating. However, emotionally, it has always been a struggle of the old “one step forward, two steps back.” I would get so far through one crisis just to realize that another crisis had been lying in wait. But, as always, I was positive I was going to get through anything thrown at me. I am ready now to take two steps forward, and push back against anything thrown at me.

As I recovered from my Hodgkin’s Lymphoma, having gained over fifty pounds from the chemotherapy, it was positive thinking and commitment that helped me to get back into physical condition, drop the excess weight. I had done it. But just that quickly, as always, was another set back.

My recovery from emergency heart surgery was no different, just more cautious. But as time went on, again, there were factors standing in line against me. It was discovered that late developing side effects were now coming to the front of my physical condition. And as I have done every time, I have taken them on head on. But over recent years, it has required the help of prescription medications, meaning, it has not resolved my problems, just hidden them. But that is going to be my next post. Right now, I am so pumped up because I think I have finally found the right direction to stay several steps ahead of negativity and finally talk the talk, and walk the walk.

To have a positive outcome, I have had to surround myself with the most positive and supportive people, professional, family, and friends. It sounds simple. I had heard through my life “you can do it” or “hang in there.” That is not good enough. Positive support and reinforcement means just that, constant, all in. Unlike my recovery from my cancer and heart surgery, I am surrounded by people who genuinely want to see me live a life, free from all the forces that try to stand in my way.

I have struck gold in a dietician who has told me, “I’m not going to give up on you”. Evidently something that I said sparked that response. I have gone through three other dieticians to get a grip on my finicky and poor diet choices. And I am heading in the right direction no longer struggling to try new foods, and also eat healthy. I am being encouraged very strongly, with plenty of incentive, to exercise. Yes, the incentive of a healthy body should be good enough, but there are so many wonderful things that are waiting for me. I have been exercising regularly and it is beginning to show. Finally, the emotional part of this journey, dealing with the stress that often comes along with the trials, but also contributes to their effects. I strongly believe that a lot of the medications that I was placed on following my heart surgery were due to the stress I have been under.

A challenge has been issued to me within the next 30 days. It is a realistic goal to me. I can reach this because I am surrounded by people who want to see me succeed. This time, I really want to turn things around.

A Carnival Of Cancers

I would like to dedicate this story to two young people that I talk to about their cancers.  One has just celebrated one year of remission, the other, is approximately a month away from completing his journey.  Both have faced their Hodgkin’s.  One has beaten it, the other is almost there.  I am happy for both of you.  Your experiences during your fight with Hodgkin’s that you have shared with me, are truly an inspiration.  The support that you had from your families, should serve as the example of the support that all patients need to get through their fight with cancer. 

Whether visiting the boardwalks of the shorelines, or local carnivals, it is not uncommon to hear some barker call out to passer-byes to step right up, and win a prize.  While the games are fairly easy to win, the prizes are awarded by some ladder scale from small to largest, and when played long enough to get the larger prizes, come with quite a price.

But imagine if the dialogue went something like this:

“Step right up, come on over, give it a shot, it’s real easy.  Everybody gets it.  Is it going to be small or large?  How lucky you feeling?  And we have a winner!  It’s cancer, but not just any cancer.  Hodgkin’s Lymphoma folks.  He’s got Hodgkin’s Lymphoma!  Who’s next to test their luck?”

Of course this is a ridiculous premise, but I challenge you to find one person, who did not hear these words from an oncologist, “You are really lucky.  If you are going to get a cancer, Hodgkin’s Lymphoma is the cancer to have.”  I will let the doctor off the hook in a second, but for now, imagine, you have just been told you are lucky and that you have cancer.  What would your reaction be?  You have a deadly disease, remission or cure is not certain, but for you, the news is good.

For myself, I was in an office of an oncologist / hematologist.  I had no idea what that even meant.  All of the prior doctors that I had seen had been looking for some sort of cold, or perhaps an injury when one of them decided to send me to this place.  I was not even placed in an exam room, but rather the office of the doctor.  He walked in to the office, around his desk, sat in his chair, and then rattled off an obviously often rehearsed speech.  I have no idea how, but with just the first two words from his mouth, “Hodgkin’s Lymphoma…”, it triggered an automatic response of something I should never have known what it meant.  By the time he finished that first sentence, ending in “rare form of cancer.”, I had already guessed that is what he was already talking about.  Then I heard the word from him, “cancer.”  I knew I was in the wrong place, the wrong patient, the wrong diagnosis.  But he kept on talking.

“Hodgkin’s is rare, but it is also highly curable, at 85%, if you are going to get a cancer, Hodgkin’s is the cancer you want to get.”  I “want to get?!?!”  Seriously?  I wanted to get cancer, so I pressed my luck and came up with Hodgkin’s?  People die from cancer, and he is telling me that I am lucky?  Pardon me, but are fucking kidding me?!?!  I did not want cancer!  Let me be clear, I did not want it.  I did not wake up that morning, and make a choice between buying a lottery ticket or getting Hodgkin’s.  Clearly, winning the lottery, that would have required luck.  Cancer kills.  How is that lucky.

Now as promised, I have to cut the doctor some slack, but hopefully those who are reading this, and have been in this situation, not just with cancer, but any serious crisis, print this, and give this to the doctor to read.  Like I said, I am not going to hammer the doctor.  Let’s face it, next to a cardiologist, the oncologist has to deal with one of the most grim disciplines of medicine.  And if they have been practicing long enough, the tended to plenty of patients, whose prognosis were definitely more grim than today.  So there may be an oncologist who may not have the best or happiest bedside manner.  But hopefully we can get it across, by passing this on, there is no such thing as luck with developing a certain cancer, or how advanced a cancer is compared to another.

I would rather have had the doctor say, “I am sorry to tell you, that you have cancer.  Here are the statistics, and here are the modes of treatments used to treat it.  I am going to do everything I can to put your cancer into remission.”  It is that simple.

I was not lucky.  I was diagnosed with cancer.  I was treated with chemicals and radiation that were toxic and difficult to go through.  I was left with some permanent after effects from those treatments, some serious, some not so much.  The last thing I consider myself today is lucky.  But what did happen?  I tolerated the treatments.  My body endured.  My physiology was able to handle the all-out assault of the chemotherapy and radiation therapy.  This was not luck either.  My body did what it had to.  The treatments did what they had to.

Please, do not get me wrong.  It is no minor accomplishment that I am here twenty three years later.  I often wonder how the other three kids who were treated with me turned out.  Progress in the diagnostic techniques and treatments of not just Hodgkin’s Lymphoma, but many cancers has advanced so far in the last two decades, and from the times before I was treated.  Survival rates for Hodgkin’s has increased from 85% to 95%.  And there are many cancers that have achieved 100% remission or cure.  In spite of the positive direction that cancer research has taken in two decades, I know better than to tell the many newly diagnosed patients or those currently in treatment that they are “lucky that they did not have to go through what I did, or those before me.”  Patients today are still being diagnosed with a deadly disease, high cure rate or not.  We are not lucky.  We simply hope that we have made the right decisions in the doctor, the treatments, and have the right support team with us.  this is not luck.  We simply count on everything to go as the books say to do.

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