Paul's Heart

32, But Who Is Counting?

Each year, when these special dates pop up, I can somehow discover that there is still room left to be humbled. Today begins my 32 year recognizing blood cancers, in particular, Hodgkin’s Lymphoma. Diagnosed in November of 1988, I finished my treatments on March 3, 1990, the date I consider my anniversary as a survivor.

To this day, still considered a rare form of cancer, less than 9,000 will be diagnosed with Hodgkin’s Lymphoma according to the NCI’s Division of Cancer Control and Population Sciences (DCCPS), making up .5% of all new cancer diagnosis. From 2011-2017, it carried a 5-year survival rate of 88.3%, one of the highest rates of survival for a cancer, which depending on the type of Hodgkin’s, some sub-rates can reach as high as 94%.

While these are fantastic numbers, there is a downside. Blood cancers do not get the recognition and support that big cancers such as breast cancer, lung cancer, and colon cancer receive. And this by no means is meant to rank one cancer over another, but it also does not mean that blood cancers should not have just as much focus, especially with a success rate as high as it does. And this is what that matters.

I was treated with 4000 grays of ionized radiation and a very toxic cocktail of chemotherapy. Both of these modes are no longer used in treating Hodgkin’s and this is due to research and progress in just three decades. But as anyone involved in radiation will tell you, being exposed to the amount of radiation I was, is a very bad thing. Sadly, there are survivors before my time, that were exposed to far worse levels. And out of the seven drugs I was given to fight my cancer, three are still being used today, still dangerous, but still necessary because nothing has been found to replace them. And with a high success rate, science and research does not really place that urgent a need to “finish the job.”

My health issues from my treatments are well documented throughout the years of “Paul’s Heart.” Over the last thirteen years, and twice in the last three years, I have faced lifesaving corrective surgeries to my cardiac system (double bypass, a stent, and carotid stenting).

And as big as the number 32 is, .2%, or roughly 960 annual deaths from Hodgkin’s (or its complications from treatments) is an even more important number. There have been so many that I have met in person, or through the internet who have inspired me, encouraged me, who are no longer here, placing me in the position that I was once in, hopefully providing inspiration in longevity for those Hodgkin’s patients and survivors who have come after me. My friends who have passed on are never forgotten, and many, their loss still continues to have an impact on me.

This year, as well as the last, has been a challenging one, with surviving cancer not being enough. For over a year and a half, and likely for the rest of our lives, at least mine, Covid19 will always be a part of my survival, and the need to avoid it. I do all that I can, from recommended mitigation efforts to prevention, and so far it has worked. I credit my endurance with this effort to what I went through with my battle with Hodgkin’s. I know what needs to be done because I trust my doctors, and I have excellent support behind my efforts. I can only wish it did not take a health crisis like cancer for people to understand the seriousness and the steps needed to get through this crisis.

In November, I will mark thirty three years since my diagnosis, and in March, my thirty second year of survival (having finished my treatments). My special calendar on this page has my 40th countdown set, but if I am being totally honest, my goal is to hit the 50th “club” of which I actually know quite a few. Imagine, there are people who have survived cancer over five decades. I never thought that would have been possible 32 years ago.

As always, thank you for reading, and thank you for your support.

Paul

MaryAnn

Last evening, I had received news, that a fellow long term Hodgkin’s Lymphoma survivor had unexpectedly passed. If you have followed my blog, I have written about the many health issues that we face, that for normal healthy people to overcome is not as risky, but because of our complicated exposure to extreme levels of toxicity of treatments decades ago, there are times when the body just cannot take anymore.

I have been blessed over my survivorship to have met so many others in similar situations like me, whether it be in person, or on-line. Some I connect with more often than others, a lot of that having to do with similarities of symptoms and diagnosis.

Besides our similarities of Hodgkin’s and long term health issues, she also resided near where I used to live. This served as a common “ice breaker” to open conversation about any health struggle we were having. MaryAnn was a loving parent and grandparent, something I am half-way through my journey currently (and am hoping to wait on the second part for a bit longer). As a friend on social media, I saw all the wonderful doting on her grandchildren. She was a very proud and happy grandmother.

She loved to travel. And if there was a second most favorite topic for her after her children and grandchildren, according to her social pages, it was animals. MaryAnn loved animals, a lot.

But as long term survivors, we deal with a lot of serious moments at times. And we all have our own defense mechanisms to get us through each of those situations. And honestly, that is what I am going to remember most about MaryAnn.

She very rarely posted her actual photo as a profile picture. But seemingly every day, she would post some sort of characature, often reminding me of claymation, of doll-appearing characters, in various display. Some would be comical, serious, and honestly, some a bit twisted. But I often looked forward to the frequent notification of the profile picture change. It was always entertaining.

As I said, this was not something that was expected to happen, yet is something that survivors have learned to expect. And when one of our survivors passes in this manner, it is a stark reminder to us, to make sure that we take advantage of every day that we have. Her mother had just passed away less than two weeks ago, and prior to that, she was experiencing some common symptoms (to survivors anyway), that would be addressed. There had been no indication that she was in dire trouble with her health. Only in the past few days did it appear it was going to be much more serious.

MaryAnn will be missed in our “family” of survivors. And I will miss the anticipation of the “profile picture of the day” from her. She will me missed.