Today marks the 27th anniversary that I heard the words, “you are in remission. Go enjoy your life.” Some cancer survivors recognize their anniversary date as the day they were diagnosed at which point, would put me then at nearly 30 years since I was diagnosed with Hodgkin’s Lymphoma.
I have made this bitter-sweet announcement every year. I do not celebrate this day. It is not a day I wish to celebrate, because there are so many that I personally know, or have known, who have never even gotten to hear the word “remission” or continue to struggle.
I continue to struggle with Survivor’s Guilt as I have right from the beginning… why am I still here, and other’s not? Hodgkin’s has a survival rate of over 90%, which in spite of being a rare cancer, is still a very good cure rate. And thanks to survivors like me, with similar longevity of survival or even greater, yes, there are many who have survived Hodgkin’s longer than me, patients today are treated with a much finer tuned treatment, with similar success rates. But for those same survivors with the same longevity as me, we have been left with so many late developing side effects from the treatments that saved our lives, and medicine was not prepared for our health issues. Imagine being exposed to four times the lifetime maximum exposure of ionized radiation, chemicals that destroy the heart, chemicals that are actually used to poison in warfare. That is what I and so many others have been exposed to (or more). For many of us, these late effects have been worse than the cancer.
Yes, like I said, I do not celebrate this day, I continue to fight for this day. In 2008, I suffered the first of three near fatal episodes caused by the late effects from treatments (heart, pulmonary, sepsis). From day 1, I have had to fight for my rights as a patient. Every day, I fight against discrimination for reasons such as employment, insurance, or just someone who feels that I get favorable treatment just because I had cancer. There have always been emotional issues to deal with, as clearly, my life that I had planned as an adult would never be the same. I am the only survivor of six in my family to be living after cancer. Cancer has taken three grandparents, my sister, and nearly three years ago, my father. I have said “goodbye” to so many, of all ages, either from the disease itself, or complications of the late effects from the treatments. Last year was one of the worst in terms of fellow survivors that passed away. I am so fucking tired of dealing with cancer.
But what is it that was the deciding factor that I would beat a disease that as a child, all I had ever known about, was everybody died who got cancer? Ok, clearly, there is no end to how far I will go to fight for my survival. I may lose battles, but I will never give up fighting. Those who truly know me, know this fact about me. My daughters were not around when I fought my battle, but they have witnessed what the late effects have done to me. And they know how much they mean to me.
So what else could have contributed to my longevity? Luck? I am sure a part of that played some sort of role. But I am driven today by my children. I am hopeful that someday they will learn that cancer can be prevented. They have personally witnessed my support of other cancer patients and survivors and know what it means to even just be an ear for someone to talk to. My primary care doctor has learned about long term cancer survival from me, as well as the specialists responsible for my care. In fact, one doctor has made it his mission, to make sure I get called “grandpa” some day. I am not rushing that day either.
I have support from people near and far, old friends and new friends, fellow survivors, and many, just good-hearted empathetic people. I have met hundreds of other survivors in person, and have befriended thousands more on-line that I may never even physically meet. And my closest friends, do a great job, of making sure that I take care of myself. The fact is, there are probably many reasons why I am still here.
And for that reason, I am going to continue to fight everyone and everything. I am going to fight for patients’s rights. I am going to fight to educate medicine to learn there is a whole society of people who have survived a horrible disease, and has left them battling side effects that for many, just do not make any sense. I am going to continue to fight discrimination in all its forms. I am going to continue to fight for not only affordable health care, but the care necessary for survival. I am going to continue to fight our government to make sure that myself, and others are not only not forgotten, but that we get the care we need and not dismissed because, well… our “bodies have been through too much so we’re not going to go to any extra lengths to treat” me. I did not ask for these late effects, or the negative ways that I have been treated because of them. And I will fight against anyone who says it is not fair to them that my burden of health should be placed on society.
You can see on my counter, I am approaching another huge milestone in just a few years. Clearly I am counting on a lot more fight left in me.
Paul's Heart 