If My Survivorship Will Mean Anything… Part 1
- Author’s note – if you, or anyone you know has received an anthracyclene type chemotherapy, like adriamyacin or doxyrubicin or others, regardless of the cancer, the following post is very important for you.
I am coming up on my 27th year in remission of Hodgkin’s Lymphoma. For many cancer survivors, reaching the 5th anniversary is a big deal. But as any cancer survivor will tell you, being able to meet someone, who has beaten the same type of cancer for a much longer period of time that they have experienced the same cancer, it is really a big deal. I cannot speak from the survivorship perspective of other cancers other than my own personal experience with Hodgkin’s Lymphoma. I was treated with 4 times the lifetime maximum of ionized radiation. Mention this fact to anyone working in a nuclear power plant, and forget a doctor understanding the severity of that statement, a power plant worker knows that even they are not experienced to that much radiation. I was treated with some very bad chemotherapy drugs, poisonous, destructive, not only to the cancer cells, but to healthy cells also. Fortunately, the modes of treatment I underwent, have been replaced by a better understanding, better treatments, and better follow up guidelines. But is it 100% better? Hardly.
As survivors like me began to live longer passed our expectancy, we began to develop late term side effects from the treatments we received. The bad part is, medicine was not prepared for this. Research had not been done on long term survival because cancer survivors were not expected to live long enough to develop those late effects. Survivors like me, became guinea pigs, human “lab rats” for studies to see, just what went wrong, though it resulted in long term survival, and what needed to be changed. Only a handful of us Hodgkin’s survivors percentage-wise are aware of the many issues that we suffer from cardiac to pulmonary, muscular to skeletal, gastrointestinal to endocrine, psychological, secondary cancers and more. The rest have no idea why their young bodies have degenerated the way they have, often with symptoms undiagnosable, and definitely not relatable to someone of a younger age than considered normal. In fact, as I write this, one of my closest fellow survivors is currently in the hospital, being treated yet again (well over 50 different incidents) for an unknown medical emergency, clearly related to her treatment history.
I would love to tell you that in the 27 years since my treatment, medicine has learned more about survival and better cancer treatments and follow up protocols. But the truth is, only a small amount of medicine is aware of such. The majority of updated technology and information is limited to the larger cancer facilities along with guidelines established by the Children’s Oncology Group, which now clearly lists the risks associated with each treatment option.
This post, actually being written in 4 parts, is going to be the legacy of “Paul’s Heart.” Because as you will read on, this story is not just about one survivor, one death, one particular cancer, but for many other cancers as well. With this post, I am going to going to make my survival count. I am going to make my survival make a difference. I am going to keep a promise that I made three years ago.
I am asking you to please, continue on with the remaining parts of this post. Please “share” this story on your own Facebook page, group, Twitter, whatever social media you deal with. The information I am going to share with you, is going to make a difference to someone you know. Medicine is not catching up quickly enough, as you are about to read. But with your help, we are going to help change that.
Please continue on to Part 2.