March 14th, 2004, my life changed forever, and for the best.
The date is easy for me to remember, as it was my grandfather’s birthday. More currently, and perhaps more popularly, March 14th, or numerically, 3/14, just a slight reconstruction of the numbers, and you have the number “pi” 3.14, hence “Pi Day.”
But on March 14th, eighteen years ago, my oldest daughter was placed in my arms by a loving caregiver from the social welfare institute in China where she was living. I had become a father for the first time, immediately knowing that I would want to bring home a sister for her by repeating the same adoption process.
I remember landing in Hong Kong on March 13th. Our guide had informed us, to get some sleep. We were going to the government center to meet our daughter the next morning, two days earlier than planned. I was definitely not going to complain about that.
We had travelled with several other families, all having gone through the paperwork and screening processes. All of us were gathered in a large room, some sitting, some standing. Everyone had cameras in hand.
Then came the noise, babies crying. A lot of babies. There were here. They had arrived.
This is the actual moment when I saw my daughter for the first time. Having always known my daughter for being observant her whole life, I could see in this picture, she was taking everything in, like something was going on, but just what. Fortunately, she has always been a kid who rolls very easily with changing situations.
We spent a little less than two more weeks in China, before heading home. Then the fun would begin, being a Dad, going through all the stages from talking and walking, helping with homework, teaching activities like riding a bike and skiing, birthday parties, vacations and now, approaching graduation.
Anyone who knows me, knows, I am not ready to let go. At the same time, I am so anxious, proud, happy, and excited for her next stage of life. She has an amazing gift, and with her next level of studies, she will fine tune that talent, and her future will be set.
With my long term cancer survivor issues, I never thought I would see this day fourteen years ago. But I have made it. Nothing has stopped me from getting to this milestone, in both of our lives. And with her sister right behind her, this rush that the three of us are experiencing right now, is only going to get more exciting.
You are looking at the title, and the cover photo, and wondering if I am having some sort of crisis. I assure you that I am not. But as is prone to happen to me in the course of a day, something prompts me for a post, only to be given a stronger example. Please, just indulge me, and follow me.
So this morning, as I was getting ready to run out for a few errands, I looked up, and noticed a light bulb out. It is just a bulb, but it is frustrating me. Over the last several years, I have replaced it at least twice, nowhere near the “1000 hours” of life advertised on the box. The other two bulbs in the light bank, do not burn out. For the record, though I have not kept count, pretty sure I have not hit the “1000 hour” mark. But what makes the one in the middle go out repeatedly and not the ones on the outside? Just something that made me go “hmmmm…”
The first task of my day, was to get an oil change. Usually an uneventful thing to get done with a car. But, I noticed, my car had begun to start slipping on wet surfaces, and it was just my opinion, after seventy thousand miles, it might just be time for a new set of tires. I asked my mechanic to take a look at my tires, and if needed, order me a new set of four.
The mechanic took a look, and said the back tires looked good, only the front tires would have to be replaced. It caught me off guard. I looked at the front tires myself before going to the garage, and I could see the treads were gone, and just assumed all four tires were that way, without looking at the rear tires. The mechanic proceeded to show me the difference in the tires, and he was clearly correct. In fact, with the two new tires on the front, the treads were almost identical to the tires on the rear wheels.
In full disclosure, normally, every car I have ever had, I have rotated my tires regularly. This was to make sure the tires wore evenly. But things happen. A tire could be under or over inflated and cause a tire to wear unevenly. Perhaps a manufacturing defect could result in the cords of the tire coming through before the other three tires. I admit, for the first time with a car I owned, I did not rotate these tires. All four tires were put on at the same time, a few years ago, yet only two wore out, both on the front, but not the rear two tires. Again, why did this only affect some of the tires and not all of them?
Now that I have you caught up to speed, understanding the issues that I have to deal with as a long term cancer survivor, others may have different issues, and some may have none. And there is no rhyme or reason. Science may explain some of the things, but the “why not for everyone,” can add to the complications for us emotionally. If strong enough, these differences, when known, can stir up an emotional issue I have with my survivorship, “survivor’s guilt.” Simply put, “why is this happening to me?” or “why is this not happening to me?” The strongest trigger for me, is when a fellow survivor passes away, their body no longer able to deal with the amount of trauma it has endured over the years. Do not mistake my survivorship guilt for being ungrateful. Nothing could be further from the truth.
Yes, like a set of four brand new tires, cancer treatments for a particular cancer, should result in the same results during and after treatment. But do they? No. They do not.
I need to preface what you are about to read with a disclaimer. A lot of progress has been made in the diagnostics and treatments of cancer. I am thirty-two years out now for the treatments of Hodgkin’s Lymphoma. And over those decades, my treatments are now considered either obsolete, or have been modified to be done much safer, with hopefully the same success of remission, and less risk. So the rest of this post, it is going to be geared to us survivors of Hodgkin’s Lymphoma from the 1990’s and before. There is too much to unpack to cover everything, and the point of this post, is to demonstrate the fact that there is no rhyme or reason, why some of us develop late side effects from our treatments, some do not, and those that do, many not develop issues that others may develop.
Up until the 1990’s, the extreme high dose of radiation therapy used, and toxic cocktails of chemotherapies were administered without much knowledge of potential side effects developing later in life, should a Hodgkin’s survivor live longer than five years, a standard in the world of cancer for life expectancy. But the fact is, with Hodgkin’s having one of the highest rates of remission, there are hundreds of thousands of us, and many are in remission even longer than me, forty and fifty years. Unfortunately, back when we were treated, there was no real plan for following up, to monitor for any late side effects, because none were known. It was never studied, because we were not supposed to survive cancer for decades like we have. But we did, and we do.
Here is where my tire analogy comes in. I have a few fellow Hodgkin’s survivors who were treated around the same time period as me, were the same stage (or level) of cancer, and treated with similar methods. But our late issues are mostly all different, whether they have occurred at a different pace, different health issues, or perhaps none at all. Some of my fellow survivors faced not only a relapse of Hodgkin’s, but some, secondary cancers, even more than one. I have had two close calls between a suspicious spot in the radiated area of my neck, and a nodule of my thyroid. I do have two other potential concerns for cancer, of the esophagus and lung cancer, areas both in the radiation field.
Cardiac wise… wow, where to begin. This I feel is one of the most underrated areas of follow up for us. Because the majority of us are fairly young, yes, I consider 56 years old to be young, standard cardiologists underestimate the potential for cardiac disease and heart failure, a result of complications from our treatments. I was 42 and dying when mine was discovered, by accident, eighteen years after my treatment. A “whim” by my primary care doctor, saved my life, and set me on a rigorous path of care and follow ups. Since then, I have had two more heart surgeries, and will likely have more in the future. Some of my fellow survivors have not had this experience.
Not everything is visible to the naked eye either. The dentist will notice issue with the teeth and jaws. Muscles in radiated areas are easily noticed with a shirt removed, perhaps one shoulder hanging lower than the other. Spinal deficiencies and changes can sometimes be noticed.
You could go through all of the body’s systems of my fellow survivors, and you would see, just as a brand new set of tires, or a light bank, everything will likely occur at a different pace, if at all. The tragedy, along with those who pass away, not having had the ability or opportunity to monitor their health, which could have made a difference, is that there are hundreds of thousands of survivors who still do not know this. On the peer support pages I participate, I believe membership numbers average around 900+. Only 900 survivors out of hundreds of thousands of survivors are definitely aware of what may be happening to them. The rest, like me originally, will need to have some luck, a doctor who has the open mind, to probe a little further, for a condition that does not make sense either with the symptoms or the age of the patient. Because medicine has not caught up yet. And though my fellow survivors and I do all we can to communicate our issues, it is not enough, and it is not happening fast enough.
Finally, the crass comparison of survivorship to tires? Cancer survivors would be Michelen Sport PAX tires, some of the most expensive and high quality tires which even if they suffered a nail in the tire, would still keep running. Therefore, it is all about the wear and tear, for both the tire, and the cancer survivor, and clearly not all are the same.
Today I recognize yet another anniversary of the day I finished my chemotherapy for Hodgkin’s Lymphoma, now 32 years ago. Among my circle of fellow survivors, many of us recognize this date, while others choose to go with the date that they were diagnosed. Going with the diagnosis date as the anniversary date, is supported by a popular concept recognized by many organizations, that just being diagnosed with cancer, makes you a survivor. For me, I use my last day of treatment. Technically, March 2nd was the last injection I received, but I still had one oral drug I was taking until March 3rd.
As I am still following precautions for Covid19, tonight is going to be just as it has been the last two years, just a quiet night, likely a lot of reflecting. As I have mentioned many times before, thirty-one times before in fact, this anniversary is bittersweet to me, because of all the other survivors not just that I have known, but also never had the chance to meet, who either did not survive their battle with Hodgkin’s, or lost their battle with their late developing side effects, similar to what I deal with.
While it is no small fete to continue to survive cancer, now into my fourth decade, the health issues from the treatments that were used to save my life, are a major struggle for me as they continue to add up. This is now the 3rd anniversary that has followed yet another major surgery. I have had three major surgeries in the last three years, two of those surgeries last year. Two of the surgeries involved my heart, the other, a carotid artery.
Looking back, over the decades, in spite of what I have gone through, I would not change my mind in the decision to accept the treatments that saved my life. The alternative was a certain death from one of the most curable forms of cancer.
May 20th, 1990, just over two months of completing chemo, I got married (for the first time). Seven years later, I began a career that not only fulfilled me, but would provide me with one of the most important benefits of my survivorship, health insurance I had otherwise been denied, just because I had cancer.
Another big anniversary, 2004, I became a father for the first time and welcomed my oldest daughter, Madison.
Two years later, 2006, Madison would become a big sister to Emmalie.
In 2008, my life after cancer would change in a dramatic way.
This photo has been used many times on my blog. This photo was taken when I came home following my first heart surgery, an emergency double bypass that would be attributed to damage from the radiation used to treat my Hodgkin’s Lymphoma. This would be a major turning point for me. Because in spite of being told at that time that I was going to die, at any time from a fatal heart attack, I could not have wanted to live more. And to that, I credit Madison and Emmalie with giving me every reason to want to live. The thing is, I had no idea, this situation was not something once and done.
I had finally heard the term “long term cancer survivor,” and it was used to describe cancer survivors who faced late developing side effects from their cancer treatments. Health surveillance of me would discover that I had additional damage to my cardiac system (specifically my heart), my lungs, my gastrointestinal system, my thyroid, my upper torso (neck and shoulders), my spine, and more. The damage from my treatments was finally progressing enough that it was getting noticed.
I was determined though. Like I said, my daughters gave me the will to want “tomorrow,” a lot of “tomorrows” in fact. And that will would be tested, again and again.
Between March of 2012 and February of 2013, I would make five trips to the emergency room, one via ambulance again facing a potentially fatal event, the others less critical but serious nonetheless. Each time, all I could think about, were my daughters.
2014 would bring other challenges, not cancer related, divorce from my second wife, mother of my daughters, and the loss of my career, due to the rapid declining of my health. My determination to see my daughters grow up, into adulthood, could not have been any stronger.
In 2019, I would have my second heart surgery, a remnant from my 2008 open heart surgery, that had been left unrepaired, in what turned out to be false hopes of correcting itself via the open heart surgery.
Of course, later in the year, Covid19 would strike. But as my doctor once told me, “I cannot stop or reverse what is happening,” and that meant I would be extra challenged in 2021, not once, but twice. I needed to have my left carotid repaired, and eight months later, my third heart surgery, both performed while not only trying to not get infected with Covid19, but under the strictest of protocols in the hospital.
I expect a few of the upcoming years to be uneventful, at least I hope, which will allow me to steamroll to other exciting things that will happen in my life; my daughters graduating high school, college, and hopefully marriage and grandchildren. These were things I did not expect to see when I was told that I had cancer, and definitely did not expect to see, following that first heart surgery. But now, I will do all I can, and expect everything of my body not to let me down, so that I can complete my life.
On a final note, and yet another reminder of why I do not necessarily celebrate this day, I have a fellow survivor, going through open heart surgery today, again, another survivor of the treatments that cured her of her Hodgkin’s. But she is an even stronger fighter, in that she has beaten cancer multiple times. Gail, you are in my thoughts, and I will be looking for the updates on your recovery.
As I always do on this post, I will close with my annual expression, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure you are still following me. And if you are not on that highway yet, hurry up. It’s a great ride.”
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