Paul's Heart

3 – 2 – 1 Fire Engines

***I am going to stress, this is not a political post, and any comments including political commentary will not be published and/or deleted.

It was a concept, called the “moonshot initiative” back in 2016, that President Obama announced during his State Of The Union speech. The push was inspired by the passing of the son of then Vice President Biden, Major Beau Biden, who died from brain cancer. The goal, to eliminate cancer once and for all.

Growing up in school, as early as my kindergarten years, I remember all the fundraising to research cures for cancer. Fifty years later, though many cancers can be put into remission, still too many die. We have seen so much progress in so many other areas of society, yet the number two killer, cancer, continues to not be stopped.

As a 32 year survivor of Hodgkin’s Lymphoma, and as involved as I am with advocacy, I have no problem making the claim that we have just accepted that science has done enough, that survival rates of cancer are good enough, not everyone can be cured. Like bile stuck in the back of my throat, this thought makes me sick. But the fact is, over the recent decades, cancer research had actually been reduced, at least the funding for it. There is no reason, that the high remission rate for Hodgkin’s that existed in 1988, 85%, has not resulted in a 100% cure rate over thirty years later. I cannot speak for all cancers, but I am sure that the sentiments will be fairly similar.

So when I heard that President Biden was announcing his “reignition” of the Cancer Moonshot initiative, he had my attention. Because of my personal involvement with the world of cancer, I am able to put my political gripes aside. I wanted to hear what he said. I wanted to hear the goals hoped for by boosting this program. As an advocate for cancer patients and survivors, I am all too aware of what we lack and need to support each other through cancer. We just are not able to do it on our own. Representatives that we have meeting with members of Congress have not really produces anything tangible up to this point. Remember, in recent decades, funding for cancer research had been reduced, not increased.

The first and probably main point President Biden made, was that he wanted the cancer death rate, which has been climbing dramatically in recent years, “cut in half within 25 years.” Some would ask, “why not eliminated? Why settle?” It is like going to a smorgasboard, loading up your plate, perhaps getting a second plate to fill along with the first. You get to try everything on your plate, but very likely you do not finish even one item completely. Cancer has been around for hundreds of years. And there has never really been a 100% commitment to eliminating cancer. To make the claim to stopping all deaths from cancer has not happened in fifty years, and is not likely to happen at least in my time, hopefully my daughters will see this day. So for now, I feel a 50% reduction in a rate that is constantly increasing, is a good approach. Realistic.

There is another major goal with this “cancer moonshot,” that affects nearly every cancer patient and survivor, improving the quality of care for both, and not just in therapeutics, but in the actual care itself, from the knowledge and skills of the doctors themselves, to the mental health of the patient and survivor, and an improvement to the overall quality of life during and after cancer. Probably the biggest obstacle or challenge for a cancer survivor, is getting medical care for late developing side effects from the treatments that put their cancer in remission because too many doctors just have not been taught this important chapter in their medical books. It is not good enough just to get us to remission. I know it sounds like I am being ungrateful. F* off if you actually believe that.

One way to lower cancer deaths is to prevent cancer, or at the least, detect it early. Let me tell you, it is a hell of a lot cheaper to do a preventative screening, than it is to run a full course of treatment of chemotherapy. THEN WHY IS IT NOT BEING DONE!?!? Actor and advocate Ryan Reynolds recently made headlines, just as late night talk show host Jimmy Kimmel years ago, by videoing their colonoscopies (well, at least the parts that could be shown, and honestly, the most important part was the “reveal”). You can hear the doctor explain what was found, polyps, and learn just what happens if a polyp does not get removed. And then you see the genuine gratitude of Reynolds, knowing that a possible cancer diagnosis, had just been avoided, by prevention. According to Roswell Park Cancer Center, 5-10% of polyps will turn cancerous, and depending on the size, increases the chances.

I myself, because of my cancer past, am already a risk for additional cancers, and undergo a colonoscopy every two years (most of you are only expected to go through one every ten years unless polyps are found). But guess what? Each colonoscopy, multiple polyps have been found, and while up there, removed before they had the chance to turn cancerous. Having been through cancer once before, and knowing the financial toll, prevention is definitely the better way to go.

The fact is, we have screenings for so many forms of cancer. But where is the big push to get them done. There is always reluctance to get a colonoscopy or prostate exam, pap smear, mammogram, and many more. For some, it is about stigma (like the stupid concept that getting a colonoscopy might make a person “gay” because of going up the rectum – not only is this ignorant, it is also stupid). For others, it is about fear, what if?

Another interesting factor, is the “age adjusted rate”, which is a fancy way of saying, people are surviving longer after they are treated for cancer. NO SHIT SHERLOCK! That means that research needs to be done on the issues faced by survivors from the late developing side effects from the radiation and chemotherapy exposures. Duh! Anyone following “Paul’s Heart” has heard about this issue many times. But it is not good enough to be able to treat these issues, too many, most survivors in fact, have no idea where to turn to. And if they are lucky enough to find someone, getting access to that care is another hurdle. One more issue to be dealt with, communication needs to be improved not just between doctor and patient/survivor, but between the doctors themselves when multiple practices are involved.

If you have paid attention, I have always spouted the success rates for Hodgkin’s. And several other cancers share those high numbers as well. Why are we not seeing 100% yet? Science knows what has worked for so many, why settle for “good enough?” On top of that, many treatments are so toxic and damaging, often times, permanently, worse, deadly. The “moonshot” hopes to continue to discover specifically targeted and new types of treatments from immunotherapies and mRNA therapies and such. Even some cancer now how vaccines. Why not more?

You can definitely count on more “awareness” when it comes to what individuals can do to help to prevent cancer from diet to exposure to such things as smoking and chemicals.

With the passage of the 21st Century Cares Act, an additional $1.8 billion was provided for new cancer research (per whitehouse.gov). THIS IS NOT NEARLY ENOUGH! Not when you consider all the cuts over the years prior. If we were truly treating this like a “moonshot” (I am too young to remember JFK’s speech), then all the stops should be pulled out.

One new creation, and I do believe a step in the right direction, is the creation of the Oncology Center Of Excellence, so that cancer-related decisions such as therapies and information can be streamlined, as opposed to getting bogged down in the red tape the FDA, CDC, and NIH. Another department has been formed with “moonshot” called ARPA-H, the Advanced Research Projects Agency For Health. I don’t want to sound bitter, but while this department definitely will be focused on speeding up research on prevention, detection and treatments for cancer, ARPA-H will benefit many other serious illnesses such as Alzheimer’s and such.

There is more that “Cancer Moonshot” is going to tackle. The issues of inequity, whether racial, religious, sexual, all play an added role in hampering those diagnosed with cancer whether it be economical, geographical, or just plain bigoted. Science needs to find out why certain treatments work for some and not for other, why some relapse and some do not, and why some people have later health issues during survivorship. As the whitehouse.gov site points out, the rapid discovery of treatments and vaccines for Covid19 prove our ability to get the same results for cancer.

President Biden also recognizes the tolls taken on patients and their families, financially and emotionally and wants better support as the patient moves on through survivorship.

One of the best resources to help get this done, you are reading it right now. Well, I am just one of thousands, who are willing to share with science, and our government leaders, our experiences, our concerns, and our needs. Who better to inform or teach our government and research, than actual patients and survivors?

There are a few more details, more organizing, more departments joining together. I just hope that this is finally the push to make it happen. Politics aside, there is absolutely no excuse for one of the most advanced countries in the world, not to be further than where we are today.

So, “ground control to Major Tom, commence countdown. Engines on.”

Survivor’s Guilt… Not What You Think

Any time that I have brought up the issue of “survivor’s guilt” in regard to one of the many lasting effects of my survivorship from Hodgkin’s Lymphoma, there is always at least one person, who will make the comment, “why would you feel bad about living? What an ingrate after all the efforts to save your life!” Now, to qualify that statement, it has typically been made by someone to the best of my knowledge, who has never had to deal with a potential tragedy. So, I will make it quite clear, in this post, I am not ungrateful for the thirty-two plus years I have experienced after my fight with Hodgkin’s Lymphoma. The last eighteen years have been my best years so far, years that I did not think I would ever see because of my health complications from my treatments for my Hodgkin’s.

So, now that I have cleared up what “survivor’s guilt” is not, what actually is survivor’s guilt? According to Centerstone.org, “survivor’s guilt is a response to an event in which someone else experienced loss, but you did not.” Though it can be assumed to refer to life, it can also refer to property, health, or anything else important to someone.

To keep things simple, I am only going to refer to my own issue with survivor’s guilt. I know plenty of other cancer survivors who deal with this, and I know others who fight this demon for other reasons, such as fires, car accidents, earthquakes, tornados, hurricanes, and a lone survivor of a small plane crash. This is how survivor’s guilt has affected me, and still does.

I did not always have survivor’s guilt. I completed my treatments in March of 1990 (so that is 33 years next March). Life was good. I had gotten married. Job was going well. I was in the market to buy my first house.

But one thing that oncologists (cancer doctors) do not tell you, is that you are never really done with cancer once your treatments end and you are in remission. There will be follow up appointments including blood tests and scans and the awful anxiety that comes with each approaching appointment. The frequency of these appointments gets less as the years go by until you are lulled into a false sense of security that you do not need to be seen after five years. Spoiler alert. You do need to be seen beyond five years, and you can actually thank long term survivors like me for making medicine recognize that need. But that is a different post.

My first ex-wife, yes the one that I got married to during my cancer, could not have been happier to put cancer behind us once my treatments were done. As I was re-acclimated back into social settings (you know, that no one was going to catch anything from me, cancer or related to my treatments), she saw our lives getting back to normal. Actually, it was going to be what she considered normal.

I however, had developed this need to “give back” for my second chance at life. I had heard of a pilot program called “Cansurmount” being started by the American Cancer Society. This was a peer-to-peer trained counselor program, that would match survivors of a particular cancer, with a patient currently going through a similar diagnosis. It was a lengthy process, but one that would cover nearly every potential scenario and pitfall that could be run into, and things to avoid. Having struggled through my own Hodgkin’s journey emotionally, I really could have used this program.

No time was wasted upon completion of my training. I was immediately matched to a fourteen year old girl, who had Hodgkin’s Lymphoma also. Her story can be found at this link:

Jennifer’s Story

Spoiler alert, if you did not read the story first, Jennifer passed away prior to graduating high school. I had spent a number of years visiting her and her family, even as she entered hospice. But if you remember, my post a few days ago… “Could There Be Such A Thing?” referring to the “good” cancer of Hodgkin’s Lymphoma, as Jennifer was dying, and she was not my only patient I was working with as I had three others who all had better prognosis, I began to experience something that was not covered in my training. And honestly, I don’t think the American Cancer Society had thought about either.

I could not help, sitting across from Jennifer’s mother, wondering about her thoughts if they were similar to mine, “how is it that I am getting to live, free of my Hodgkin’s Lymphoma, and Jennifer will die? What is so special about me that I got to remission, and she will die? Why can’t someone do for this child what was done for me?” Go back to the definition, an event that causes a loss for someone else, but not for you, survivor’s guilt.

While I believe I was quite effective in helping so many other patients, the death of Jennifer, not only my first patient, but my first patient to die, I was devastated. I did not feel that I could look any other patient in the eyes and wonder too, will they be the next to die or what different circumstances will they experience. I decided to take some time off which actually ended up being approximately a year. I had finally been able to put this feeling (it had no name back then) behind me, and I was ready to take on new patients again. And I did. I was one of the more active volunteer counselors. I seemed to have overcome the guilty feelings of my surviving cancer.

In the mid-1990’s, I learned about the internet and through the internet, there were email support groups where patients could share their similar and different situations about their particular cancer. I had found a group for Hodgkin’s Lymphoma, two of them actually. I felt that I could be of support for those in this group as I could relate to the many situations from diagnosis to treatment, and just like I did in person, I could do so only on a larger scale, all over the country.

There was one fellow survivor, named Linda, like me, she was also in remission for Hodgkin’s. But she had a different reason for being in this group, which I would learn about later on. She had often referred me to join this other email list, for “long term survivors.” At four or five years of survivorship, I felt that I did not meet the qualifications to earn the title of “long term survivor.” After about a year of her pushing, I ended up joining that email list, soon leading to another issue for me. The “survivors” on this list, actually of different cancers, but many Hodgkin’s, had health issues following their treatments, some, very extreme. I immediately felt overwhelmed, and felt that I did not belong on this list, because except for a few issues (certain permanent hair loss, a thyroid issue, and infertility), I definitely had nothing in common with these survivors. And then it hit me, if I went through similar treatments for the same cancer, why I am I not having those issues? What is so special about me? Remember the definition, an event happening to someone else, but not to you. Again, I was having this overwhelming guilt by having a fairly normal life post-cancer, this for yet a second reason. Just like before, I found myself having to remove myself from this email list, because I really felt out of place, and felt that my good health, was unfair to share with those who were suffering. And just like before, I found myself coming back to this email list. But this email list could get so overwhelming, I would actually cycle, on and off, several times, to allow myself to gather my thoughts. But that guilt just would not go away.

Then, in 2008, my life changed even more so dramatically than it did with my Hodgkin’s Lymphoma. The radiation treatment back in 1989 (I also underwent chemotherapy) used such a high dose (no longer used), not only did my body retain the radiation, but actually developed progressive damage to various parts of my body, especially my heart. Again, you can read about that story at:

CABbaGe – Not Just A Green Leafy Vegetable

Once I learned that an imminent fatal heart attack was about to happen, and what was the cause of the condition, I soon became a life-long member of that “long term survivor” email list. This list was where other survivors could find answers to questions doctors were completely unaware of, because long term cancer survival had never been taught in medical school. These survivors, were teaching its members, the questions that needed to be asked, the recommendations that needed to be made for treatment, and offered support, that no matter what, we were not alone in this struggle. Eventually, we would discover some major medical involvement with several key doctors, but nowhere near the number of doctors that were necessary.

But, just as what happened occasionally in the treatment stage, the passing of a Hodgkin’s patient, so would happen occasionally to a long term survivor and one of the issues that they were dealing with. And it could happen as part of a procedure or complication, something totally unknown and undiagnosed, or the result of something spontaneous, combined with the compromised health. This was an important group of people to each other, and many of us would actually get the opportunity to meet up with each other in person (we did not have Facebook or Facetime). So when a fellow long term survivor would pass, again I would get hit with that wave of guilt, whey them, why not me?

I would actually spend many years in therapy over this issue (spoiler alert – I still have this issue). Again, I want to be clear. I am not ungrateful for the time I have been given all these decades later. And I accept the many diagnosis I have faced over the years related to the treatments I went through.

But towards the turn of the century, I found Facebook. And I found a group that dealt with similar issues as the email list that I belong to. And this group did not just cover the US, but reached world wide. And there were photos. We could actually see each other, and we were actually able to communicate a lot more efficiently and often. Over the years, this group has grown and grown, now with members nearing a thousand. We members would also take the opportunity to meet each other as we travelled whether medically or recreationally. This created a huge bond for us to the point, that today, many of our members refer to our group as a “tribe.” And we are a very tight and supportive group. Each and every one of us, makes caring for each other, offering support, and personal experience, to help anyone in need of such.

As our numbers in membership have grown, two things have also grown. We can actually see the longevity of Hodgkin’s survivors, living 30 years later like me, 40 and many living 50 years later. And do not be fooled. With Hodgkin’s often looked at as a pediatric cancer (even though I was 22 when I was diagnosed), many of these 50 year survivors were not even teenagers yet when they were diagnosed. But the toll taken on our bodies from decades ago, has left us with bodies seemingly aged decades older inside. And just like with the email list, members of our group also pass, from either their late effects, complications, undiagnosed, or complications from spontaneous non-related events. I would say, we lose probably an average of five members each year.

This is when it really gets hard. Because now we have a name to go with these feelings that I, and many others have, “survivor’s guilt.” Fellow survivors that I haver personally known for almost as long as I have been in remission are now gone. Why am I still here? Why have I not gone through all of the long list of other things that my deceased fellow survivors went through? And that is really the odd thing, not one of us survivors is like another. We all have different issues. Some of us have access to care with doctors who have the knowledge today of our issues, too many do not. Some do not have any health coverage at all. And holy shit! It wasn’t enough to deal with what we do, and along comes Covid19? Don’t worry, not expanding on that. My point is, I am now at the point, where so many survivors I have known, are gone, and I am one of the more “senior” survivors. I cannot help but feel my mortality creeping up on me, no matter how hard I fight it.

I don’t feel guilt for surviving my 32 years of Hodgkin’s Lymphoma. But I am dramatically affected by those who have not survived, experienced multiple relapses, developed other cancers because of their treatments, or, as in my case, developed other health maladies, some quite serious. I have lived with this “survivor’s guilt” as it turns out for my entire survivorship, and will probably never be over it.

This does not mean that I do not enjoy life. Quite the contrary. I am able to focus on my daughters, who almost lost me back in 2008. I have goals that I want to reach, and though I know I am not guaranteed to reach them, I am only thinking about doing just that. I have watched both of my daughters grow, one has graduated, now in college, and my younger will be in college next year. And then there will be the next stages in their lives that I want to experience. And with each milestone reached, I believe I will see the next one, and the next one.

I will not let “survivor’s guilt” take that away from me.