Before That Next Milestone
I have a huge milestone coming up in my cancer survivorship of Hodgkin’s Lymphoma. And unlike past milestones, I want to be able to recognize it, and celebrate it, because it really is and should be a big deal. But I have this issue, survivors’s guilt that I have carried with me my entire survivorship. And it is powerful enough, that with each milestone I recognize, there comes a “yeah but” with every recognition.
I have been this way my entire survivorship. Even as I was going through my treatments, I was so hard on myself, unable and unwilling to give myself credit for what I was going through in spite of pleas from my nurse and counselors. No one is tougher on themselves with survivorship than I am. It is even documented in my medical records. I went through lifetimes, that’s plural, lifetimes of levels of exposure to radiation therapy, and the most toxic of chemotherapy, and yet, my attitude was always “someone has it worse than me.” I was not going to allow myself to feel pity or mercy when others I perceived were going through worse. Through my survivorship, this attitude has continued with the various late side effects from my treatments that I deal with. I talk a good game with those who feel their issues are not as bad others, and I remind them, “that does not make your issues any less real, any less painful, any less important.” Empathy, having been there, done that, I feel a level of guilt each milestone, anniversary, or birthday that I get to experience, when others do not. My survivor’s guilt is not in having survived cancer, not at all. I am 100% grateful for all that I have gotten to experience over the years. No, my survivor’s guilt is for all those survivors that I have been blessed to have met in my life, in all stages of their survivorship from treatment to life after, no longer here, some never having even had the chance. That is my guilt. Why me and not them? As I write this, news has just gotten to me of yet another long term survivor of Hodgkin’s has passed. Of the first three survivors I ever met, over thirty years ago, only two of us still remain. A kid of 24 years old, in remission from Hodgkin’s only a few months before he passed away due to treatment side effects. Long term survivors who needed surgeries to address late side effects for their heart, lungs, skin cancer, etc., only to succumb to complications. And there there are those who have spontaneous events that their bodies just cannot go through anymore. I have had my share of time spent in the ICU, on the operating table, 3 heart surgeries and others, pending cancer diagnosis, and my list goes on. Why am I still here, and others are not? Please, do not tell me I am lucky. Luck has nothing to do with it or I would stand on the beach during a thunderstorm or play the lottery.
Over my years, I have heard my doctors and nurses try to encourage me, to get me to understand how extreme everything was that I went through. And I would tell them that I understood more than they knew. But my internal “toughness” was how I dealt with my cancer, and how I deal with my survivorship. As a result, each milestone, every anniversary, and all of my birthdays, I do celebrate with a “yeah but…” I want this year to be different. I want to give myself permission, that it is okay to celebrate as loudly as I can, what a big deal this next milestone will be. And I know there will be so many that want to celebrate with me.
After some thought, I came up with an idea this year to help me to really appreciate this upcoming Friday, while recognizing and remembering all those who came into my life through survivorship, but not here to celebrate with me. I am going to take care of this, as well as some other things before Friday, all that will be left then is to celebrate a very big day.
I maintain a memorial page of survivors no longer with us, who had the same cancer as me, Hodgkin’s Lymphoma. Some survived decades, and some never even made it into remission. I personally knew most of them. They provided inspiration to me. I miss them and wish they were here right now to see this day. And my thoughts are always with those facing surgeries and other medical interventions for the late side effects.
Now for the other part that I need to take care, and release if you will. There has been a lot of toxicity that I have carried over these four decades, and as Buddha tells us, I need to let this go, it does not matter. In fact, it never has. And so, I am going to let it go.
Friends, co-workers, and even family members who turned their backs on me, selfishly disappearing because of fear or the negativity of cancer having come into their life with me in it, even though I was the one facing it. Spoiler alert, I am still here, and you are not. And this behavior has continued as I dealt with all the late side effect health issues that I have faced. I know I sound angry, but it is more of a disappointment. In a time when I needed the support most, many chose to bail. Or worse.
I do not speak of it often, but when I say “worse”, it is not an understatement. For more than a decade during my survivorship, I found myself having to survive something I consider more difficult than my cancer and all of my health issues combined, divorce. Imagine, cancer should easily be one of the worst things a person deals with. But with cancer, at least there was going to be an end, and at least there was a plan to get me through it and the people responsible for getting me through it, I had confidence in doing so. Not so with my divorce. For ten years, I faced multiple players who felt they had a stake in my divorce, and the relationship with my daughters. Friends chose sides. Family turned their backs. All claimed to have my daughters best interests yet chose an involvement that meant to cause only the greatest harm to them, if efforts had been successful to keep my daughters from me, a fate that would have been worse to me than dying from my cancer. I actually have messages from trolls wishing me ill that I have not forgotten. But I cannot help but think, of all those that wanted to watch my daughters grow, when was the last time you actually saw them? Because if you had not turned your backs on me, against me, you would see how wonderfully they are doing, well in school, and beautiful young women. And yes, they love their Dad.
It is not lost on me, I do not take my milestones for granted, each possibly being my last one. I have great doctors who take care of what they see, which leaves only the unexpected to happen. Longevity is not something the paternal side of my family is known for, most barely reaching 55 years old, so that strike is already against me, then you add my cancer and all my late side effects. So I am more than aware of my mortality and how fragile it is. My father as he dealt with his lung cancer said, “all I want to do is reach my 70th birthday.” He passed at the age of 70. I am not making any final milestone announcement because I still have so many to reach.
And that is where I am going to leave this off. My next post, likely on Friday, is going to be about that milestone. I am releasing the things that bear down on me so that I can allow myself to celebrate this milestone. And it will be the best, as my daughters will be by my side, as they always have been.
Paul's Heart 