Today marks the 31st time that I get to recognize National Cancer Survivors Day. 31 YEARS!!!
My first memory of the word “cancer” came in elementary school more than fifteen years early than my diagnosis, with a fundraiser at elementary school (annually), called “Send A Mouse To College”, sponsored by the American Cancer Society to help find a cure for cancer. Of course, as a five-year old, I had no idea what cancer was.
But by the time I had entered high school, I learned what cancer at least meant, death. Though I had members of my family pass away from cancer during my youth, I was unaware why. But during health education class, I learned about Terry Fox, an athlete from Canada, who had lost his leg due to cancer, and would eventually lose his life in 1981 to that cancer. He was a known cancer advocate raising awareness for cancer research by attempting a cross-country from, east to west, across Canada. His legacy now, since 1981, the annual Terry Fox Run, attracting runners from all over the world raising hundreds of millions of dollars for cancer research.
Unfortunately, it was also his story, that would be the first of many, to remind me, people die of cancer. I had never heard of anyone living after it.
My first personal cancer survivor was my grandmother (pictured on the right). She actually faced cancer twice, but it was her first battle with breast cancer in 1986, that gave me the inspiration when I faced Hodgkin’s Lymphoma in 1988, finishing my treatments March 3, 1990, 31 years ago. She would eventually pass away from ovarian cancer twelve years later.
Since then, I have met hundreds if not thousands of other cancer survivors, in person, or on line, each having their own inspirational story to share.
For most of us, National Cancer Survivors Day is a bittersweet day because we want to recognize and celebrate that cancer can be beaten. Life does go on after cancer. That hopefully one day, everyone who faces a diagnosis will hear the words “you are in remission.”
But NCSD is more than just a date and survivors. It is a time that we also recognize that not all survivors have been able to move on or as some would wish “to just get over it.” Emotionally many face challenges ranging from PTSD to discrimination. Physically, many of us have developed issues related to the treatments used to cure us, progressive in nature, and sometimes, no answer for them.
And then many of us struggle with this day, because we have lost someone close to us, to this awful disease, or many losses, and are not here to celebrate with us.
But we cannot lose sight of this. Today is National Cancer Survivors Day. Cancer can be beat. We are so close to finding the cures necessary.
To all my fellow survivors, today is your day! Another year!
And as I often share an expression, “as I go 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 have not made that turn onto that road yet, hurry up! It’s a great ride!”
I have a friend who shares two things every morning. I look forward to them each day. One is for me, one is for my older daughter. For my daughter, there is a post celebrating the birthday of an artist from someone over the world, over time, an example of their work, perhaps a quote from the artist themselves, and an observation from my friend. I share this post with my daughter, an aspiring artist herself, just so that she can see the variety of expressions that she has yet to tap into.
The other post my friend shares, is a daily devotional. To her credit, she does both of these posts daily, so needless to say, I count on seeing them, and will be quite worried for her, if she happens to miss a day. This deep thought each day is not necessarily complicated, yet is powerful enough to actually make you stop riding your own personal “merry-go-round” and go “hmmmmm.”
This morning’s post from her did exactly that, three photos “you find meaningful or memorable.” This may seem like a difficult task, especially when opening up my laptop, going to my photographs, and seeing more than 100,000 of them (from the day I started saving them digitally), and I have fairly many when I used to actually print them out, but there are actually three photographs that do have true meaning to me, as they have shaped who I am today.
My grandmother, pictured on the right of her younger sister, passed away in 1988 following a diagnosis of ovarian cancer, her second cancer that she faced, breast cancer being the first, thirteen years earlier (my first personally known cancer survivor). The picture does not show just how tall she is not, only that she is shorter than her sister. But my grandmother was a very strong woman, physically and emotionally. With my mother working a second shift job during the week, it was my grandmother who I spent most of my time with when I was not in school.
I give credit to my grandmother for shaping me who I am today. That path took so many detours however, when she passed away. My grandmother was my “moral compass.” In other words, if she was not telling me her opinion of decisions I was making in person, I heard her “voice” in my head when we were apart. One of her main tenets was always, “take care of others before yourself.”
While some may see this as an admirable trait, to make yourself the last priority, that comes at a price. The mother of a dear friend from high school many decades ago, once told me, “you cannot expect someone to love you if you do not love yourself first.” It was not that I did not feel good about myself. I just did not think of myself to make myself a priority.
In 1988, I had to make myself a priority, as I was diagnosed with Hodgkin’s Lymphoma, a cancer of the lymph system. I could not afford to focus on anyone else, though I definitely tried.
But throughout the rest of my grandmother’s life in my adulthood, my grandmother was there, offering her input with many challenges that I faced, not afraid to raise her voice, or speak in “Pennsylvania Dutch”, the equivalence of a child speaking under their breath so as not to understand what was said. My grandmother always seemed to keep me on the straight and narrow path with my decision, pausing me to at least think about actions, and consequences and no matter what, to make sure that I was respectful to all when I made that decision.
Yesterday marked the 7th anniversary of my father’s passing from lung cancer. There are not many photos of he and I together when I was younger, something I swore I would never let happen with my daughters, much to their dismay I have not disappointed myself.
My parents divorced when I was three, and custody went the way that it does in many divorces, not good when it came to the fathers, especially in the 1970’s. Eventually I would become estranged from my father, part his choice, part my choice. This is a time period we would both regret later in life. But as the photo shows, we did work things out. And it gave us an opportunity to learn about each other, and what he now saw in me, and what I “got” from him.
I may have missed 1/3 of my life with him through my childhood, but the other 2/3 gave me so much back, opportunities. Relying on childhood friends for experiences with their fathers, I finally got to develop a father/son relationship of my own. And in the end, I would face the biggest of all challenges that a “child” often faces, caring for that parent as he faced several health challenges, including lung cancer.
He was there when my health began to fail due to my late effects from cancer treatments years earlier. My dad got to see the adoption of both of my daughters, his granddaughters. And unlike his biological granddaughters, my daughters had their own impact on my Dad, not known for being the “cootchie coo” kind of parent, they cracked his gruff shell. As my Dad retired from landscaping, he had informed me that he would take on driving a school bus. And I was like, “but Dad, school busses have kids on them.” That was not a punchline. I was being serious.
My father ended up driving elementary school children, the same age as his granddaughters. And every day, there was a set of twins, of Asian heritage, that he told me, reminded him of his granddaughters. This brought a smile to my dad’s face ever time, a smile I do not ever remember seeing so strongly. But he enjoyed all of the children. Say what? I could not believe it, my Dad was a school bus driver, and not only liked it, but the kids all liked their grandfatherly bus driver.
One of the most memorable things that happened toward the end, as he was forced into retiring from driving the school bus, on his last run, he was given a “get well” card from his “kids” and parents, who were so grateful for all the safe transportation that he provided. I recall him telling me how uncomfortable this made him originally, that he had never had so many, if any care for him, like the way he felt at that moment.
The third photo is a no brainer, the day my daughters came into my life. That moral compass that I lost back in 1998 with passing of my grandmother, was restored in 2004, and reinforced in 2006 with their adoptions. I was now a parent myself, and that mattered to someone, actually two someone’s. Decisions I would make, affected not only me, but them as well. They would become the driving force behind me fighting for my health with all of the challenges that I have faced, and will continue to face. Things I would do or say, now had two sets of ears and eyes, documenting everything I did and said. My actions would be their examples as they grow up. They had now become, my new “moral compass.”
The values I learned from my grandmother and the importance of a parental relationship that I learned from my father, are now an integral part of the relationship I have with my daughters today. And life is good. Each day, one now in adulthood, another approaching it (a day that too many times I almost never got to see because of my health issues), I have expanded my goals in life to include one final chapter myself, one that my doctor promised me, that he would help me see, my daughters graduating, getting married, and becoming a grandparent myself.
Like everything else in my life, that path has not gone smoothly or perfectly, but we have made it the best that we could along the way. And it is not only good. It is great!
And those are my photos that have meaning or have given me great memories.
It is hard to know if expressions that we were once told as children still live on. But one that has always stuck with me, and I definitely used with my daughters, “if at first you don’t succeed, try, try again.” It applies to many things that have been dealt with in our personal lives, as well as in the world in general. Perhaps none so important as the fight to end the Covid19 crisis.
If there is one thing that is most frustrating for me, is that there seems to be no patience, there has been none from the start, in dealing with a near completely unknown virus, one that will clearly go down in history as one of the most lethal, when you go by actual lives lost instead of the falsely encouraging low percentage rate. It was obvious, we had no way of knowing much of anything about the disease, how to protect or prevent the spread, and no plan.
What we did have, was a lot of politically misguided input, which in all my years of dealing with medical issues, I have never had one issue of conflicting politics interfere with my care. But here it was. If you dared to attack the leadership, many would blame the scientists for sabotaging the leadership. Now, I cannot speak for everyone, but I know of all the scientists that I know, not one has ever worked towards anything other than a solution to a problem. The end result is a huge score, their name attached. One such critical example, Jonas Salk, you may not know his name, but you can thank him that we do not see Polio anymore.
But just as the vaccine for polio, dealing with Covid19, from diagnostics, to preventions, to treatments, to vaccines, the process is the same, trial and error, try, try again. Though it can happen, it is highly unlikely that an answer to any complex problem can be discovered right on the first go. Because of the politics of Covid19 however, scientists were immediately discredited for the very process that we have relied on for centuries for our survival. It gave those whose political stance was stronger than concern for the well-being of fellow human beings, the opportunity to say, “see, you are wrong. You don’t know what you are doing and until you do, I am not going to do what you say because you are just trying to control me.”
As for me, I cannot afford politics with my health. I have been a benefactor of science so many times, several of those critical. I am thankful for processes, protocols, and regulations to make sure that things are as safe as can be. Notice, I did not say, “to make sure things are perfect.” I do not believe that we can have 100% success in most things. Yes, it is nice if we can achieve that, but that cannot be the goal, especially when we are dealing with the Covid19 crisis.
Almost a year and half later, we are at an encouraging position, we are dealing with several vaccines which show promise, with a success rate better than any other vaccines created. To be clear, I am not an anti-vaxxer, but I do believe in processes. As I have mentioned previously, I support the vaccines that have been given emergency use authorizations. And I do that, because I understand what that phrase means. It means that research has been done, and it current results show that it will be successful, and the crisis is bad enough, that the risk of not using the vaccine, is less than letting the virus burn through the population. Dealing with multiple late effects from my cancer treatments, I have these considerations on multiple occasions.
I will get the vaccine, eventually. I do not doubt its success, that is not the issue. The fact that it has not been “approved” is not an issue either. To get the approval, all that means is that all of the other studies must be completed, as well as the other processes. No, my unique health issues, had not been researched when it came to the emergency use authorization. So there was no studies, no data, no idea, how my body would react to the vaccine, me having no spleen, and multiple other complications. Would the vaccine draw down my immunity further making me susceptible to other illnesses? Would the vaccine have any impact on any of my health issues pertaining to my heart or lungs? So far, research had only been done on healthy people. Science.
Then there is this, and this is something I do know about the science of me. The importance of vaccines is to get the body to make antibodies. I learned several years ago, following my first heart surgery, my body does not make antibodies, or at least without boosters. This is a fact. There are two vaccines that I have had to have multiple boosters to produce antibodies. I know how my body works. So here is the problem.
There are no studies on boosters (yet), especially if they would be safe. There is no protocol. All I can relate is anectdotal from stories I have heard from other survivors of Hodgkin’s Lymphoma like me. Several have had Covid19. Many have gotten the vaccine. Some have had both. There are those still dealing with lasting effects from Covid19. I know of some who had severe reactions to the vaccine, and some who had none. What to do? What to do?
Fortunately, science is doing what it needs to do, through trial and error, Big Pharm is at the stage now that they are looking at boosters, and feel that boosters will be helpful in dealing especially with the variants. But again, the is not based on people with health like mine. But science will get there. It just takes time. It is not perfect. “If at first, you don’t succeed, try, try again.”
I do have one encouraging hope, in that because I had what is considered a blood cancer, while I wait for the scientists to catch up, the Leukemia and Lymphoma Society has not waited, and is running their own studies on survivors of blood cancers such as Hodgkin’s. Fellow survivors are reporting their data to the LLS about their exposure to the virus, the vaccines, whether their bodies have produced antibodies, all of the information necessary to form an opinion on what to do with patients like me.
It is a hard balance, personally speaking. I hear my doctors tell me, “Paul, get the vaccine, if anything at least it has the potential to make the effects less severe.” And they are likely right. Unfortunately 31 years ago, I had been given an option as well, based on limited knowledge, other than “it would work.” Do not get me wrong, I am grateful for my 31 years of survivorship, and I likely still would have opted for the treatments that saved my life in spite of the potential for side effects. But my life would have been a bit more easy, had the research been done, as to what the side effects and risks of my treatments would have been, more importantly, how to handle them if and when they would appear.
And that is my only hesitancy at this point. I will get a vaccine, not sure which one yet, but I will get it. But I am following, and trusting the science. Honestly, in my lifetime, I have never seen a process or crisis, like this, and I never want to again. But I do believe we are doing the best we can.
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
Childrens Oncology Group
cancer information for patients, survivors, caregivers – child or adult
