Paul's Heart

This One Is A Tough One

This was my friend, and fellow long term Hodgkin’s Survivor, Danny. And just like many others before him, his body just could not take any more. I have written many times about other survivors I have known over the years, but Danny was a personal friend that I have known over fifteen years, so saying goodbye to Danny is going to be a lot tougher.

Like I said, I first met Danny over fifteen years ago, at a Johnny Rockets restaurant for lunch in Manhattan. Danny was having his first appointment with Memorial Sloan Ketterin’s Cancer Center Cancer Survivorship Clinic, of which I had already been a patient three years by then. He was in NYC with his wife, though she was not with for lunch or the appointment, and his young daughter was back home in Texas.

Danny spent most of the initial time, trying to gather information from me, on what to expect with this “survivorship clinic” visit, like what questions should he ask, what can he expect to be done, and he did this by listening to what I had gone through over the years. Like many of us, once our bodies have begun going down the “late term side effects” from our cancer treatments path, we don’t feel well. Worse, we feel alone. No one, even our personal doctors have a hard time understanding what we are going through. But sitting down face to face, with another survivor, or interacting on social media with thousands more, that is powerful. That is understanding. Better yet, we know we are not alone, even if those around us do not understand.

I would get to know Danny over the years. We both would go through difficulties with non-cancer related events, such as divorce, I offering him encouragement as he fought for his father’s rights to be able to see and spend time with his daughter.

Danny was definitely a man of faith, he never hid that. He was constantly on the recieving end of my “you’re going to need a little more than faith to get you through this” when it came to his health. So I would have to constantly prod him when it was time to seek medical help, and pray all he wanted on the way to the hospital. But the day he described to me, the EXACT symptoms that I experienced when I had my widow-maker blockage, I demanded that he get to the emergency room immediately. We both had extremely high doses of radiation to our chest, which is now known to cause major damage to the cardiac system. The main artery to my heart was blocked 90% (a widow-maker). His symptoms were exactly the same. And he too would be diagnosed with a widow-maker as well, undergo open heart surgery as I did, and lived to tell about it.

Danny could get quirky with me, so there would be times that he would put up a wall, to prevent talking about anything medical. He had a hard time accepting that this health emergency that he had was not just a one-off. There would be other things he had to watch out for, but that seemed to go against his putting faith in his supreme being. So we would occasionally bang heads, me getting on him to get seen, and him shutting me out. By this time, I felt like I was dealing with a little brother who needed a kick in the ass.

But Danny always did Danny. We survivors all carry ourselves in ways that make us feel that we are still living the way we want. He would survive his divorce proceedings, and be able to continue seeing his daughter under normal situations. It wasn’t perfect, but it worked for him. He loved going for walks on this one set of railroad tracks through the mountainside. It had to be so peaceful.

Danny was the real deal with how he handled adversity. Nothing was going to stand in his way. He attended a professional baseball game, and was hit square in the eye with a line drive foul ball. In the emergency room, he was cracking pirate jokes, even as it was clear he was going to lose his eye. He was already on his way to plans to overcome that handicap, including driving.

Danny would talk about his military experiences, including when he was battling Hodgkin’s Lymphoma. He had also dealt with some injuries including one head injury. But personally speaking, the military let him down, as did the VA in his later and final years.

As I had warned him, Danny’s health would continue to experience new issues from his survivorship. All the while, Danny continued trying to be Danny, literally giving his shirt of his back to help someone in need. But as his health issues got more complicated, so did the ability to get him help, either by his refusal, or the lack of experience of his doctors. And if that was not bad enough, instead of forcing him to remain, Danny would almost always check himself out, against medical advice, only to fall into more difficult and complicated situations, especially when it came to driving, and falls. At times, he could be his own worst enemy, because Danny wanted to be Danny, and he was not letting anyone, including me get in his way. It was so frustrating.

I have been described by some of my fellow survivors as a good friend to Danny. But honestly, I feel I fell short. I can use the excuse self-preservation, but there came a time I actually had to shut him out, because Danny was going through something, I would only find out later, that was causing him mentally to spin out. And it was his actions online, that ended up putting me at risk with scams and fraud, which I had warned him against. Whether he was having some sort of breakdown, or whether it was mixed with his faith, trust in everyone is the only way you can help everyone, I had to step away. I was still there if he actually wanted help, which was usually never the case.

We got together again at a conference for Hodgkin’s survivors. And it was great seeing my friend again. He was doing okay, still struggling with his health, but he seemed happy. And it was nice getting to see him meet so many others, as I have had the opportunity to do over the years.

In recent years, and weeks, I know he had several medical issues he was dealing with, and though I have only heard of his passing through 3rd hand, as well as what happened, I am not going to share that as I cannot confirm it. It is enough that I knew what Danny had gone through with his life and his health. And that I truly hope that my friend Danny is no longer in pain, and is in peace resting.

You were one of a kind Danny. You will be missed by more than you ever realized.

Cancer – Do You Feel Lucky? Well, Do Ya?

I am going to ask you three questions. Do not look ahead to the next question before answering each one. To help, I am going to skip a few lines in between each question.

If you had to choose between an apple and an orange, which would it be?

If money and time were no object, where is one place you would like to travel?

If you had to choose a cancer to be stricken with, what would it be?

Cue the sound of a needle scratching a record to a complete halt. Cancer? What?

Ok, first, my answer is an apple. I love putting peanut butter on apples. And my dream place to visit, Alaska. Those two questions were easy to answer. But that third question, what the Hell? Of course, we never think about opting for a certain type of cancer. We hope beyond all hopes never to even hear the word cancer, though it is happening more and more each day.

But the truth is, that third question really happens, well, not in the form of a question, rather, for most Hodgkin’s Lymphoma patients and survivors, we have heard this comment, “if you are going to get a cancer, Hodgkin’s is the one to get.” So, that is why I asked you in the form of a question. Imagine being told by a doctor, you are lucky to have gotten a particular cancer.

To be clear, no, lucky is the last thing I felt when I heard him say that to me. I was literally like “what the fuck is wrong with you!!! I don’t want any cancer!” If you refer to the image, you will see that Hodgkin’s ranks 6th of the top 26 cancers in terms of 5-year survival rates. Up until recently, I had never researched if Hodgkin’s was the best cancer to have. All I was aware of was the high remission rate, and I thought it meant I had a good chance at long term survival. Turns out that part was true, as I write this, I have had 37 years as a Hodgkin’s survivor.

While many of my fellow long term survivors echo my sentiment, others were not as strong, some even agreeing with their doctor. Here are some of the comments that have been shared:

“Having all these late side effects, I am not too sure about that.”

“I was told I had a good cancer (Hodgkin’s).”

“No cancer is good.”

“I am encouraged by the statistics. When I was young, breast cancer was considered mostly fatal.”

“What about all the late side effects caused by the treatments?”

“Hodgkin’s is the least of my worries at this point. All the side effects (cardiac) have flipped my world upside down.”

“No one wants cancer!”

“What really sucks… 3 of the 5 cancers above Hodgkin’s are linked to the the treatment for Hodgkin’s.” (and on a side note – along with the 3 referred to, I am also at risk of 4 other cancers in the top 26 from my treatments, along with my other issues)

“I felt lucky. I felt lucky that they knew what was wrong with me and they knew how to treat it.”

“I wanted to throw a punch!”

“I always put more emphasis on the “if” in the phrase.”

“No one from the top six says they are lucky.”

“I actually found the comment positive and hopeful.”

“No cancer is lucky and just look at the late side effects so many of us have to deal with from our treatments. It’s very scary living under the Sword Of Damacles.”

“It strengthened my inner belief that I would beat Hodgkin’s.”

While there were some who did not react as negatively as the majority of us took it, there is a range of reactions. I know personally, I wish the doctors would just stop saying it. And here is why. If you look at the graphic again, do you see any of those cancers stating 100% survivorship after five years? No. And the truth is, of the top six alone, there are too many that do not even hit remission, relapse, and worse, don’t survive.

Do not misunderstand me, after 37 years as a survivor, and in spite of all of my health issues from late side effects caused by my treatments for Hodgkin’s, I am still here experiencing my daughters lives as they continue to grow and experience life, I know that I am blessed. And I would not be here today, if it were not for the countless other survivors who have come into my life, young and old, newbies or long termers.

But that does not change, that the hardest thing to hear is “you have cancer,” and then follow that up with “you’re lucky.” Being told you have cancer does not feel lucky. It makes you angry. It makes you upset. And every word spoken after that, if it is not put in the right terms, can be hurtful.

I am glad that so many more cancers have higher favorable outcomes these days. That is one thing I have lived long enough to see. But I am also disappointed, that we have not gotten over the hump to find a 100% cure at this point.

This was a pin that I have from over fifty years ago, for a fundraiser for the American Cancer Society, to raise money for cancer research. Yes, I am disappointed that we still do not have that cure. And there really is no reason for that.

Cancer – How Important Is An Apostrophe?

September is National Hodgkin’s Lymphoma Awareness Month. It is also the month that Non-Hodgkin’s, Leukemia, all blood cancers, and childhood cancer are recognized.

Hodgkin’s Lymphoma is considered a “blood cancer.” It is also considered a childhood cancer, though it can happen at any age, but prevalently among teenagers and adolescents, most common among 15-19 year olds. I was twenty-two when I was diagnosed, and I am considered in that childhood range.

Then there is this oddity of information. Back in 1988, I was diagnosed with Hodgkin’s Disease. Discovered by Thomas Hodgkin in 1832 when he reported enlargement of lymph nodes and spleens, he did not name the disease after himself. It was another physician by the name of Samuel Wilks, who in 1865 recognized Hodgkin’s earlier work, officially giving the name “Hodgkin’s Disease.”

It was in the later 1990’s that researchers established that the malignant Reed-Sternberg cells were usually developed from B lymphocytes. In other words, Hodgkin’s was no longer some sort of mysterious disease of the lymph nodes separate from other lymphomas. Hodgkin’s was actually a distinct type of lymphoma. And in 1997, at a WHO advisory meeting, debate occurred and Hodgkin’s Disease was changed to Hodgkin’s Lymphoma officially in 2001. It is only recently that I have referred to my Hodgkin’s as lymphoma.

And now, twenty-five years later, a new issue has come up with the name. It is small in stature, but it appears to matter to some, the apostrophe in the name “Hodgkin’s Lymphoma.” A fellow Hodgkin’s survivor (I am still using the apostrophe) pointed out, that it did not appear to be grammatically correct, as there was no “S” at the end of Hodgkin’s name, oops, just no getting away from that apostrophe. But historically “Hodgkin’s disease” literally meant the disease described by Hodgkin, so the possessive apostrophe was natural. But modern medical terminology increasingly avoids possessive eponyms (I wonder how others with other major illnesses like Lou Gehrig’s Disease or Parkinson’s syndrome care about this grammatical issue). Hodgkin did not “own” the lymphoma, but his name is the identifying label. Thus, the preferred modern wording today is “Hodgkin Lymphoma”, no apostrophe, no “s”, which honestly does not even sound right.

So now, I have lived long enough to see three different eras of Hodgkin’s (I am forever going to use the apostrophe, though I have resigned myself to using “lymphoma”). There is the Hodgkin’s Disease era, the Hodgkin’s Lymphoma era, and now the Hodgkin Lymphoma era.

And that is the irony. Thomas Hodgkin himself never called it Hodgkin’s disease. He knew he had a major discovery. He just probably never thought that punctuation would become a major part of that discovery.

And to be clear, I am a 37 year survivor of Hodgkin’s Disease.