Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

My 29th Hodgkin’s Lymphoma Month


It is really so humbling to realize, I am approaching 30 years of survival from Hodgkin’s Lymphoma.

It is humbling because 30 years ago, you did not hear very often about people surviving cancer.

It is humbling because of the many health issues that I have had to deal with, as late side effects, not known possible at the time I was treated, have often left me feeling worse than the cancer itself.

It is humbling because of all the wonderful people I have met over the decades of my survivorship.

It is humbling because of the many fellow survivors I have had to say goodbye to, either the disease, the treatments, or the late effects too much to take.

It is humbling because my daughters are coming to an age, that while they were not there during my treatments, they are faced with my care in the future for my late side effects.

It is humbling, because I never thought I would be writing this, nearly 30 years from my diagnosis.

What Happens To Dragons? They Die!


From the time that many of us learned what cigarettes were, the main reason for smoking, was to be cool.  It was cool because of the other cool kids you hung around that smoked.  But what was even cooler, smoking allowed you to breath smoke, just like dragons.

Do not worry, I am not going to go off on a rant on cigarettes and tobacco, much.  Because in our quest to find a safer way to breath smoke like a dragon, vaping came a long.  Instead of smoking tobacco and all of its toxins, it was believed that inhaling a vapor, with its known chemicals (some toxic) would at least be healthier, and you could still look like a dragon.  It has not been around long, but it did not take long to figure out, vaping has its own safety issues, and is actually considered more dangerous.

With laws targeting kids under 18 to prevent smoking, kids have found an option to not getting caught smoking.  Vaping.  And as usual, there is the sense of invincibility that nothing will happen to them.  Best yet, with no hot tip to extinguish, the vaping stick can be easily hidden, with an appearance that quickly dissipates, and an aroma that can often pass off for either a body spray or perfume.  While we assume it is happening in high school, do you realize it is already happening as early as middle school?  Seriously, the kids know it is going on in the bathrooms.

While walking through the mall the other day with my daughters, we came across a dessert stand.  They were selling “Dragon Breath”.

Dragon Breath is the latest craze that allows you to ingest something, and exhale “breath” like a dragon.  A cool mist resulting from liquid nitrogen sealed in the puff treat.  Once in your mouth and eaten, you can begin to breath like a dragon.

Cool, right?  Do you really know about liquid nitrogen?  You know the solid form of liquid nitrogen… dry ice.  Do you know what happens if you handle dry ice with bare hands?  Frost bite.  Do you have any idea how long it takes to heal from frost bite?  You get the idea.  While the liquid nitrogen being used in this “food” is nowhere near the temperature of dry ice, it is still super cold.  In fact, now there are ice cream parlors that freeze ice cream in front of your eyes in minutes using liquid nitrogen.  Liquid nitrogen itself is not toxic, but the damage it can cause from frost bite or other cold issues, is serious.

Recently, a child had an asthma attack in Florida.  How could someone have an asthma attack from eating cold.  It is not the eating cold, but inhaling to cold liquid nitrogen.

While I do not smoke, I do not vape, and I certainly will not eat “Dragon’s Breath”.  First, personally I do not see anything appealing about smoke or mist coming out of someone’s face.  I know, that makes me a killjoy.  But seriously, you need to understand how fragile our only set of lungs really are, and how crucial they are to every day living.

I wish this was what my lungs looked like today.  This is actually a picture of lungs after having been exposed to 20 grays of radiation.  You can see it does not look healthy.  So, thirty years ago, I was hit with nearly 4000 grays to treat my Hodgkin’s Lymphoma.  To this day, the lower lobe in my left lung is described as “dead”, and I have many “spots” on both my lungs that have never been identified, but rather are being watched to see if they turn into cancer.  Pulmonary function testing reveals that over the three decades, my lung capacity has been reduced down to 76% which is one of the reasons I sometimes experience a shortness of breath, especially during peak times of humidity or cold air.  That’s right, inhaling humidity or cold air trigger a response similar to an asthma attack for me, the only difference is, inhalers offer no relief.  I simply have to find a comfortable climate, sit, try to breath, and wait for the episode to abate.

Most of us at one time or another have been drinking something, and it has “gone down the wrong pipe” and we begin to cough.  There is a reason.  Liquid does not belong in our lungs.  Sick and elderly patients near the end stages of life often experience fluid build up in the lungs, often only to find relief in having the fluid drained.

Yeah, I know I am being a fuddy-duddy.  But going what I have gone through, and watching my dad die from lung cancer from nearly 6 decades of looking like a dragon, I have no interest in ending up like one.

Maybe If You Hear It From Others – You Can Start To Understand


Today is a very difficult day for me.  For the second time in two days, I have been informed of yet another long term survivor of Hodgkin’s Lymphoma that I personally knew, has passed away.  The fact that this news happens is not the shocker, because most of us who are aware of our health issues, late effects caused by treatments that saved our lives, either do not make them self known, or if known and treated, and when we think we are good to go, either another issue pops up, or worse.  And no matter who we try to explain our fears, that we cannot just get over it, that our bodies are indeed challenged, and confirmed by medicine, even those close to us, still do not often get it.

But do not take my word for it.  I have a guest today, fellow survivor Danny.  I have known Danny for almost a decade, having met him in Manhattan when I was there for follow ups for my health issues.  Danny was also a patient there at Sloan Kettering as a survivor.  Danny developed his Hodgkin’s while serving in the military for our country.  And as his words will show, living a long life after Hodgkin’s, is not easy.  Just because you cannot “see” with your own eyes, does not make it not real for us.

“Being a Long Term Cancer Survivor is hard. I was diagnosed when I was 20. Yes I am thankful for the life saving treatment that kept me around this long, but at the same time I despise it.

Why?

Turns out the longer you survive the cancer, the more damage the treatment does to your body. So, while I was able to get an education and have a career and achieve some of my dreams, by the time I was 40 my doctor told me I needed to retire or I was going to die!

I have a decent retirement income and complete health care coverage, but many of my fellow Survivors do not. I worked hard as long as my body allowed me to and I was rewarded for it. Many Survivors are relatively young and would like to work, but their bodies will no longer allow them to. This makes life hard on them.

The type of cancer treatment many of us received as late as the 1990’s was very harsh on the body. Recent studies show we have a 30% reduced life expectancy in relation to the general population. I have personally known many who have passed away in their 40’s, 50’s, and 60’s… all caused from complications from cancer treatment they had when they were younger!

The life of a Cancer Survivor is hard. While our peers are out enjoying the fruits of their labor and raising their children or playing with their grandchildren, we are going to the doctor and the funerals of our friends.

Here’s to hope for the future, a cure, better treatment methods and Medicare for All.”

Danny and I share a lot in common besides our Hodgkin’s.  We both share some of the same late effects.  And I want to tell you, I know that it was hard for Danny to write what he did.  He is one of the most optimistic people I know, and he has a very good sense of humor.  And as you can see, he loves the outdoors (I love Washington State by the way).  Which is really what challenges him and how he deals with his late effects.  He is also a parent, which is another reason why we cannot “just get over it.”  We have to be our own advocate because all too often, we end up dealing with a doctor who has no idea what it means to have been dealt with some of the most barbaric treatments for cancer and live to tell about it (our life expectancy was average 5 years – and many of us are 3, 4, 5 , and 6 decades out, which means we lived long enough to develop side effects, something that was not studied beyond those 5 years.  We are the guinea pigs for better and safer treatments, and there is a long way to go.

But we survivors cannot be forgotten either.  We need help.

My tribute to my fellow survivor who passed away will follow.

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