“Hodgkin’s Disease is a rare, but very curable form of cancer that often affects younger people.”
I’m sorry. I did exactly to you what my first oncologist did to me. Without a scan, without an exam, without an introduction, my entire future was laid out to me. How rude! Here is how I would have liked both then and now to have taken place instead.
Good afternoon, my name is Paul Edelman.
It was November of 1988. I had a lump in my neck just above my shoulder, that had been misdiagnosed as the common cold. A biopsy revealed that I had lymphoma, Hodgkin Lymphoma. Over the next two months and several obsolete and barbaric procedures: bone marrow biopsy, lymphangiogram, and a laparotomy, I was staged at 3b. I went through 30 treatments of radiation exposed to 4 times the lifetime maximum of radiation and 8 months of a chemo cocktail which included a drug used in wars and by dictators meant to inflict harm on thousands of people. But used for the good, I have been cancer free for over 23 years.
One stereotypical image that I had of cancer patients undergoing chemotherapy patients were severely emaciated, malnourished appearing people. Strangely, this was not my experience. Quite the contrary, I experienced what many of us refer to as “pumpkin face.” Instead of losing weight, due to the high dose prednisone in my chemotherapy cocktail, I actually gained over fifty pounds. This was made possible by an out-of-control appetite.
There had been a long term plan once I completed my treatments. A follow-up schedule had been determined all the way up to my five year anniversary – every three months for the first year, four months for the next two years, then six months up to the fifth year, after which, I would be seen annually.
In the short term, I needed and wanted to get back into a similar physical condition prior to my cancer diagnosis, which meant dropping my chemo weight. I worked hard exercising and dieting, and lost the fifty pounds that I had gained, and a few extra.
My long term plan went as scheduled also, taking the five full years to achieve annual follow-up visits. But due to a simple office move, my status as a patient changed. While ultimately, it was my responsibility to make sure that I continued my follow-up care, I laid all accountability on my oncologist who appeared to not remember my annual check-up, which I was okay with. For the first time in seven years, I finally had a life again, without cancer. After all, that is all we want from the time we are diagnosed.
Thirteen additional years would go by before my lapse in judgment would become apparent in a harsh way.
A rare complaint from me to my primary care physician, and my physical status would change from hopeful Adonis to Starship Enterprise “Red Alert.” I was about to have a fatal heart attack at any moment. The only thing that was more surprising for a seemingly healthy 40-year-old needing an emergency bypass, was the cause.
The very treatments that saved my life from cancer, over time, had damaged the main vessel to my heart. Further testing would reveal even more damage, to other parts of my body. You see, even as little back as the early 1990’s, survival of cancer patients was still based on five years. There was no firm protocol to follow up on us after that time.
There was never a doubt that I would beat cancer. But not once, did I ever think that I would see the day, that I would stand in front of so many inspirational people, patients, caregivers and survivors. And while I am humbled by you, I am more than excited to tell you, that there are millions of cancer survivors, all over the world. I have met many of those survivors. From Johanasburg, Africa, to England, Canada, France, California, Pennslvania, and the Lehigh Valley, one year survivors, five year survivors, twenty year survivors, and yes, I have met a sixty year survivor, we exist. We may not be celebrities or professional athletes, popular musicians who have never-ending media coverage, but we have something much more powerful… opportunities with events such as The Relay For Life, Light The Night, Race For The Cure, and so many more allow us to see with our own eyes, hear with our own ears, and believe with our whole hearts that we can not only survive cancer, but perhaps in our lifetime, actually prevent cancer.
A lot has happened in the more than two decades of my survival, historically as well as personally. I ended up having a career working in the same field that saved my life, medical research. I was engaged during my diagnosis, married during my treatment, divorced years later, dated, and married again. I have two beautiful little girls that we adopted from China.
To be honest, it was not easy. There was not a lot of knowledge back then about what could happen as a result of my treatments. But through research funded through events such as this, the risk of late developing side effects to the heart, the lungs, muscles and several other areas of my body are much less likely today. Just two decades ago, the knowledge, expectation, and publicity of long term survivors was not well known. Today, there are not only less toxic treatments with lesser side effects, short term or long term, but better survival rates due to more strict follow up guidelines. Major cancer facilities now not only treat cancer patients, but also treat survivors. An important need given a lot of attention is the emotional toll of survivorship. Whether dealing with the discovery of a late developing side effect or the struggles of survival guilt, there are now resources available world wide. There is help for the survivor who wrestles daily with the emotions of why someone dies from cancer, while I live, why some face multiple relapses and I faced only one chapter. Cancer survivors are no longer seen as hypochondriacs with mysterious ailments because someone in their early forties, physically fit, extremely active, should not be experiencing shortness of breath and tightening of the chest, especially when he looks healthy. Therefore, the critical tests might not have gotten done.
At the time of my twentieth anniversary of the completion of my treatments, I corrected something that I should have addressed twenty years earlier, realizing that I had not done so. In the emotions of completing my treatments, in the race to run away from that oncology office and never look back, I forgot to do one important thing. Sure my oncologists, my faith, and the support of my family had a lot to do with my success, but the unsung heroes of my story and many others, more likely than not, do not often get the appreciation or the recognition or hear the success of their efforts. And so I set out to find Brenda, Noreen, and Ilona, my nurse, technician, and counselor during my battle with Hodgkin Lymphoma. Unfortunately, one had passed away, from the cruelest of ironies, cancer. But I did find Brenda, my oncology nurse, and Noreen, my radiation technologist still working in the field that saved my life, still doing what they did best, caring for cancer patients. I gave them each a hug, we share stories and tears, and most importantly, I thanked them. I thanked them for caring for me and caring about me.
These are some things that were invented or discovered in the last twenty years: seedless watermelon, anti-lock brakes, the digital camera, the English Chunnel, the Mosaic web browser, the protese inhibitor to stop the growth of the AIDS virus, the plasma TV, stem cell research, the portable defibrulator, Tivo, Wifi, the Xbox, the Genome Sequencer to make diagnostics quicker and more accurate, Google maps, and of course, the I phone,
In just 20 years since my treatments, survival rates for many cancers have increased: ALL 94%, Hodgkin’s 95%, Non-hodgkins 80%, Retinablastoma 95%, Neuroblastoma, 75%, Wilm’s Tumor95%, Osteosarcoma, 70%, Medullablastoma 85%, Prostate 98-100%, early stage breast cancer 88%.
A lot has happened in more than 23 years. My grandmother, my cancer role model who battled and beat and breast cancer fifteen years, faced cancer a second time. Of course, there is my own history. And most recently, just weeks ago, my father was informed that he has lung cancer. And at the age of 70, I can hear only one thing in his voice, he will survive. He was born and grew up in the time when cancer killed everyone, when cancer was contagious, when cancer carried a stigma. But he won’t survive because of statistics, he will survive because he has seen it with his own eyes. When I share my stories, I will tell everyone of all of the people that I have seen and have beaten cancer, and many, living long lives. And for those of you looking for someone who has survived a long time, here I am. And yes, I am still followed up, by one of the top doctors in the country who was a pioneer in studying Hodgkin Lymphoma and late treatment effects. And just as younger physicians today have been taught, it is much easier to deal with any of the late effects that I have experienced, when caught early enough. And today, with less toxic and more effective treatments, and knowledge of side effects to look for in the long term, doctors, technicians, nurses, and therapists can now take care of you before it is too late. And you are followed-up from the final treatment through the rest of your life. As much as all we ever want, is to be rid of cancer, to never hear it mentioned in our life ever again, post-care is critical and medicine today knows this.
I would like to close with a signature line that I often use in emails and posts when congratulating survivors on milestone anniversaries, welcoming patients into Club Remission, or encouraging patients that their cure can happen. “As I travel down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if you’re still fighting your cancer, I’ll drive 55 so you can catch up to me.”
Thank you so much for this opportunity to share my story with you. I wish you good health and longevity, and most of all, on behalf of all cancer patients, caregivers, and survivors, thank you for all of your support and efforts.