The Mind Of A Cancer Survivor
This post has been sitting in my head for quite some time now. It became impossible to sit on any longer, though I needed to hold out one more day. Yesterday was my oldest daughter’s 21st birthday, and I wanted yesterday to be her day. Because yesterday was all about her milestone, not mine.
Yes, with my oldest daughter turning twenty-one years old, that is another milestone of mine, as a cancer survivor, that I have reached, that I really never thought I would see the day. But as happy as I was for my daughter, there have been so many thoughts running through my head, that I cannot control, just how lucky I truly am, to have reached another milestone, of many already reached.
The meme pictured above came across my feed today, and the timing and the wording could not be more perfectly said. Over the years, I have made reference to “survivor guilt,” which many mistake me for feeling guilty that I survived cancer, Hodgkin’s Lymphoma. Nothing could be further from the truth. It is the guilt of why others have not been as fortunate as me. Please understand, and I am going to shout it, “I AM SO GRATEFUL THAT I AM STILL HERE AND THERE IS SO MUCH MORE THAT I WANT TO DO AND EXPERIENCE!” But my guilt and sorrow is for those who never got out of remission, developed other complications or other cancers and passed away, and other survivors whose bodies simply could take no more.
As the second part of the meme states, “Holy Shit!” every day is a reminder what could be gone tomorrow. And as my daughter celebrated her 21st birthday, actually her second birthday outside of the US, she was celebrating with friends and I could not be more happy for her. I celebrated her birthday going through old photos of her, her younger sister, and myself.
You see, neither of my daughters were around when I battled my Hodgkin’s Lymphoma. It would be more than a decade before I would even get my chance at parenthood. But being in long term remission, I really did not consider parenthood a milestone. I was done with cancer. I was “over it” as many people wanted me to move on with my life after cancer.
But four years after my oldest daughter was adopted, and two years after my younger daughter was adopted, my world of cancer survivorship, eighteen years after that I thought I was done with cancer because the doctors even told me so, my cancer past came crashing to the present. I was dying. I was not aware of that, but following the emergency double bypass I had to have for “widow maker” damage to my heart, with a blockage of 90% of the LAD (left anterior descending artery), my cardiologist put it bluntly after the surgery, “it was not a question if, but when” I was going to die.
There it was, the first event that nearly took my life from my daughters. I will recognize that day next month, sixteen years ago. So my heart got fixed, that should be the end of the story, right? Unfortunately not. You see, what my oncologist (cancer doctor) was unaware of back in 1995 (my five year milestone Hodgkin’s-free), that the radiation therapy and chemotherapies that I underwent, had the potential to cause progressive and lethal situations. It turns out the scientists knew about it. They just never passed it on to the doctors.
But nearly four years later, I was carried out of my house on an ambulance stretcher at 3am, again, dying. I had developed sepsis, a fatal infection. I was unaware of what was happening, felt fine even as I went to bed that night. I had developed something called “aspiration pneumonia”, which without getting too technical, was caused by me unknowingly inhaling gastrointestinal “stuff” into my lungs while I was asleep (another complication due to radiation). Sepsis had developed, and without the correct and fast treatment, I would have died. Again, this is where the story should have ended, but it did not.
I had another round of aspiration pneumonia nine months later. All the while, remember me mentioning about the “progressive” side effects from my treatments? They were still doing their things. But here is the kicker. Because of the risks of doing anything to correct any other issue being more risky than doing nothing, the situations needed to be as dire as the other events I had gone through. I had to hear the words “severe” for any issue to get corrected. I often refer to my body as a human ticking time bomb. The good thing is, I have been watched by many doctors, participating in a “survivorship clinic” setting. This is where doctors exist that “get it” when it comes to following up the needs of cancer survivors that too many other doctors still do not get. So all these different doctors that “watch” me decide when it is time to do something, in other words, yep, death or some other serious issue is impending.
Case in point, 2019, I needed to have the RCA (right coronary artery) stented, because back when my bypass was done, that cardiologist felt the RCA would get better on its own. It did not. Then in 2020, my left carotid artery had finally reached “severe” status, scorched by radiation damage as well, and the risk of a stroke was now a reality if not corrected. Next, in 2021, my aortic valve had reached a “severe” status from the calcifications from radiation damage needing to be replaced.
Is there more? You betcha! But you get the idea now how the second part of that meme plays out. And the truth of the matter is, any of the events that I mentioned, or any of the many that I did not mention, any of those could have led to me missing what I consider some of the most important milestones of my life, in my daughters lives. And for sixteen years, that is what both of my daughters have known. It has become a “given” by my daughters, that any health challenge I face, I will get through it, because that is all that they know.
But I know something that they do not. Time is not my friend. You see, all of the things that I have had corrected, because the progressive issues from my treatments are still at work, will need to be redone again some day, and possibly some other new issues develop, because they have had time to do so. The question is, will my body handle second attempts or the new things that develop. For some of my survivors who faced similar situations, their bodies could take no more. And for some, they were not even aware of anything when their survivorship came to an end. With my daughters still so young, they have not been introduced to that stage of my survivorship yet. But that time is soon coming.
Look, I know this post is probably one of the heaviest posts anyone has read from me in a long time. As my daughter was celebrating twenty-one years, I could not help but, because my brain betrayed me that way, reflect on the many things that almost kept me from seeing their school graduations, birthday milestones, and so much more.
I will leave you with this. I really am a positive minded person. It is a disservice to me as a friend to tell me to “just get over it,” or “just be positive” because my body and my cancer survivorship dictates otherwise. But I do go to bed each night, expecting to wake up the next morning, and do the things I have planned tomorrow. And there are many more tomorrows that I want, college graduations, weddings, grandchildren, so that means I will continue to let the doctors do what they need to help me reach those further milestones. But ultimately, I have no say in tomorrows. I have learned that from other fallen survivors.
Yes, I am grateful for surviving Hodgkin’s Lymphoma thirty-five years. I am grateful having survived all of the medical side effects that I have faced. But I also realize, that at any moment, as I am constantly reminded, I could also miss the next milestone. This is what cancer survivorship is to me. I am making the most of my years as I can.
Paul's Heart 