Paul's Heart

Life As A Dad, And A Survivor

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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4 thoughts on “Maybe If You Hear It From Others – You Can Start To Understand

  1. Susan Leigh on said:

    Hi Paul….I have been following your entries into the Facebook site for those of us who have been treated for HD in the 1960-1990’s. I think you are also on the ACOR LT survivors listserv. Anyway, I am working with a fellow survivor who is a writer, and who is now writing about the survivorship movement. She is using much of my journey somewhat like a case study throughout the story as I was first treated right around the time that oncology was a beginning specialty. I chose to be an oncology nurse after my experience as this too was a new specialty. And I have dedicated my professional life to raising awareness about long-term and late effects of cancer treatment. I have also been dealing with multiple late effects myself in the form of secondary cancers, cardiac issues, muscul0skeletal issues, etc. Anyway, I am wondering if I could share your blog with Judy Pearson, the writer who is also a breast cancer survivor? And she may be interested in interviewing you if this is something that interests you. I too am a veteran as I was an army nurse in Vietnam and returned with HD. So she might be interested in speaking with Danny. Anyway, let me know if any of this interests you. And I hope to keep up with your blog as I love your thoughts and writings. I too have lost far too many wonderful friends from late effects, but consider myself so fortunate to have had them in my life.

    Thanks for your insights.
    Susan (Susie) Leigh
    Tucson AZ

  2. Susan Leigh on said:

    I am so sorry to hear of Danny’s death. Thanks for introducing us to him.

    • Apologies for the confusion, but Danny is still with us. His guest commentary was shared as his words reflect how many of us feel when the suddenness of an event affects us, and those around us struggle to accept that is how our world is. Danny was reflecting on the passing of another survivor, actually two, who had passed away in two days.

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