Hodgkin’s Lymphoma Month
September brings around again, Hodgkin’s Lymphoma Month, Lymphoma Month, Blood Cancer Month, and Leukemia Month. This year marks 35 years that I was diagnosed with then, Hodgkin’s Disease, now referred to as Hodgkin’s Lymphoma. I still do not understand the need to change the name, after all, Shakespeare wrote, “a rose by any other name is still a rose.” Cancer is still cancer, whether you call it “disease” or just lymphoma.
To have survived this long, I have seen so much progress in the diagnosis, treatment, and after care of the cancer I was once told, “if you are going to get a cancer, this is the one to get.” Yes, my doctor told me that. Many of my fellow Hodgkin’s were told this stupid line. While statistically, it has one of the highest remission rates, nobody wants to have cancer.
In the four decades…wow that sounds weird writing it that way… since my diagnosis, most of the barbaric methods to diagnose and stage Hodgkin’s are no longer used, such as the dreaded lymphangiogram and the staging laparotomy. The treatments that were used to get me into remission, some of the most toxic and dangerous drugs and radiation levels, are pretty much obsolete or at least used in lower levels (the idea of treating more with less). And most importantly, if medicine is going to get us into long term remission, doctors now know that we must be followed up for the rest of our lives, because of the potential late developing side effects from our treatments, that decades ago, science was unaware of the potential, because science had no idea, it was never researched what happens to Hodgkin’s survivors who survive longer than that magical five years we all reach for, just to believe that we beat Hodgkin’s once and for all.
Something else we have now that I know I did not have back when I was dealing with Hodgkin’s Lymphoma, a plethora of information at my fingertips, which would help to support my survivorship, guide me to important guidance for care needed for unexpected and unknown maladies related to my treatments. Social media would also bring together, and into my life, some of the greatest human beings I will ever know, my fellow survivors of Hodgkin’s Lymphoma, many from all over the world. And I have met so many of them. I often refer to them as my “brothers and sisters” or “phoma homies”. The true inspiration for me, are my fellow survivors that are ahead of me 40, 50, even 60 years of survivorship!
I wish that all forms of cancer could celebrate the successes that we of Hodgkin’s Lymphoma get to do. But I would be remiss, if I did not recognize all of those who did not survive, or lost their lives due to conditions related to their late side effects.
I have no regrets in my life during my survivorship. I have so many things to be grateful for, especially my two daughters. I am blessed that I have gotten to see both of them grow up into young women, heading in their own directions now. They were not born yet when I had Hodgkin’s Lymphoma, but they are aware of my history, all of those who have come into my life, and know the price my body has paid for that remission. And they do not hold back, when they have an opportunity to talk about their Dad, hoping that relaying my story to someone they know battling any cancer, might inspire them as well.
Though I have no control over my health, I have no problem stating, I am far from done. I may have page showing my next milestone of 40 years, but 50 years as a cancer survivor is my ultimate goal.
Thank you everyone for following and reading “Paul’s Heart” all of these years. I am finally 95% done writing my first book of the same name, and I do have three more planned. Please, as always, feel free to share my stories. If you are ever looking for the one of the ultimate cancer survivors to speak at one of your events, give me a ring/email. One of the greatest joys I get, and my way of giving back, is to inspire others.
Paul's Heart 