(photo courtesy of Facebook, Scott Fair, Pennsylvania German page)
I would neither try to spell or pronounce this expression in the Pennsylvania dialect, though the last relative I knew who could speak PA Dutch (german) could have done so easily. It means “second Christmas.” Canadians have “Boxing Day,” the PA Dutch have “second Christmas.” It is a continuation of the Christmas holiday, but whereas Christmas is more known to be more chaotic, there are no gifts to exchange, no urgency to assemble for dinner, or get to a packed church. Second Christmas is all about spending time, and a bit more quietly, with friends and family. Sadly, there are not many who are aware of this tradition anymore, which has been replaced with mad dashes back to the stores for returns and after-Christmas deals.
The Christmas holidays can be seen as an end of year “check point,” a chance to look back on the past year as Christmas signals the end of the current year. New Year’s kicks off the new year, duh.
The one thing that remains constant for many, myself included, is the Christmas tree. Year after year, it holds the same decorations with one or two new ornaments, representing a place I have visited that year. My tree is filled with ornaments and all the places I have gone. The tree is the one thing I can count on during the holiday season, to not cause me heartache.
I have mentioned many times over the years, the emotional duress I feel during this holiday. Whether it be someone’s passing or a medical issue, I have rarely been allowed to enjoy, just the holiday, and this year has been no exception. Compound this with the memories that happened just this past year. As I have gotten older, that means there are less people in my life than there were last year, and I am more aware of who and what I have lost. It does get harder to fake the holiday happiness for the sakes of others putting more pressure on me. And I definitely contrast Christmas’s of past with today, quite clearly in fact, often grieving for those memories.
It was much easier to get through this holiday when my daughters came along, because it was no longer about me and the losses I kept experiencing. For my daughters, it was about experiencing magic, believing in good, and keeping in their hearts the kindness and empathy they had been taught. But just as it happened as I got older, my elder’s Christmas changed, just as mine has over these years. My daughters have their own tree to decorate instead of help with mine. There’s no more anticipation of gifts magically appearing under the tree if they slept through the night, or woken up before the sun came up.
Everything is just quieter now, only memories fill the air, wanting my daughters to be little again, or even myself. Reflections that could take me back to a time, when I did not have to deal with the adult losses that keep happening this time of year.
(photo courtesy of Fine Art Media)
I never expected my Christmas to be a Norman Rockwell painting or Hollywood movie, and my holidays over the last decade plus years have been far from traditional especially with my daughters. But we have made the most of those years, and we have plenty of memories from when they were younger.
Now it is my daughter’s turns, as adults, to start making their own Christmas memories and traditions, and I, along with the memories that I have to offer, will be a part of their holidays as well.
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.
I can still struggle to believe that I am still here, 37 years after my diagnosis of cancer, Hodgkin’s Lymphoma. I remember those early days of survivorship, especially that first year, fearful and scared of my cancer coming back as quickly as I was declared in remission. Symptoms that I had prior to my diagnosis reappeared reigniting concerns of relapse during my first couple of years, reminding me of an imaginary clock, planted in my brain by my doctors, “5 years.” Five years was the magic number I was told if I reached I could consider myself “cancer free.” Thinking of anything longer was not even a thought. I never thought of anything other than living to five years, never about the years after. And here I am, 37 years after that diagnosis. November 1988 to November 2025, there it is, four decades. It seems like forever, and though my memory is not as sharp as it once was, the details of 1988 are still clear as day to me.
While the first third of my survivorship is pretty much unremarkable, as in, it just happened, one year after another, it is when I became a Dad, that I feel my survivorship actually meant something, mattered, made a difference. Out of my 37 years of survivorship, my daughters and the memories we have made, make up 21 of those years.
I have one photo album completed with memories of our first two decades together. Twenty-one years together is a very long time, especially from a cancer survivor point of view. I assure you, these twenty-one years have flown by. There are so many memories we have made with each other.
But there was no bigger impact on my life, than when I faced the fight of my life, a “widow maker” blockage with my heart that my survivorship took on a whole new meaning, and I could feel it, a completely different drive or motive, an increased will to live. It was no longer about just surviving, I wanted to live. I had so much that I wanted to experience with my daughters. And most importantly, I did not want my daughters to experience what so many of their friends had already experienced in their young lives, the loss of a parent.
I remember the looks on their faces when they were finally able to visit me in the hospital, as I was still hooked up to tubes and machines. My excitement and joy to see them after being separated from them for the first time in our lives, could not ease the fear in their eyes and confusion by what was going on. It was only when I finally went home, the path to recovery and a return to “daddy/daughter time” would begin again.
The length of time that I had survived cancer had become a “back burner” thought (back burner referencing where people put their pots on the stove to just sit while the rest of the meal cooks). My survivorship had taken a different direction, now faced with dealing with late developing side effects from the very treatments that treated my cancer. My care as a survivor would take a different direction, and would not only be more involved, but more active as my first heart surgery would not be the only issue I would face in the rest of my life. In fact, there would be many more.
There is an expression among many of us in the cancer community, “not letting cancer define us.” This basically means, not letting cancer, or in my case, the many late side effect health issues that I deal with, take away from what is most important to me, my daughters. I acknowledge that I need to take care of these issues, but I must also pay attention to the needs of my daughters, and the time, likely reduced and limited that I will have with them. And clearly, if I do not take care of my health, that time will be even less. There is a need for balance between the two.
But here we are now, both of my daughters, now adults, are set to make their own paths. And there is so much I want to witness of their futures. I know they want me to be there to see all the things they do.
There is so much life after cancer. It is just hard to see that far ahead, but before you know it, that future is behind you, and you find yourself wishing to have those times back.
Radiation Exposure
Information about radiation exposure, limits, and risks
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 