Paul's Heart

To Know You Are Not Alone

A little over two weeks ago, I got to attend an event that as a long term cancer survivor and patient/survivor advocate, only comes around every so often. By far, this was the largest endeavor for those especially with health issues similar to mine, caused by circumstances similar to mine – a diagnosis of Hodgkin’s Lymphoma and late developing side effects from the various and extreme treatments used to save our lives. One of my friends, also a fellow long term survivor whom I met many years ago previously, during the height of one medical emergency after another recently, described himself as a “unicorn,” because doctors soon learned that treating Danny, with the health crisis he was in, was like seeing a unicorn, a rare if not impossibility. Health issues like Danny has, also myself, and many in attendance at this gathering experience, literally filled the room with “unicorns.” But unlike his doctors, there were many advocates and doctors and nurses in attendance who “got it” when it came to the care of long term survivors. To them, we were not “unicorns,” but people who need help, care, and support.

I will say, that since the pandemic, except for a few rare occasions, I have avoided large indoor crowds, and when I have been inside, it was for a cause I felt worth the risks I was exposing myself to with my extra vulnerability to Covid19, such as my daughters graduations. I have functioned quite well over the last four years, continuing the precautions that have kept me from being infected, grocery shopping, picking up take-out food, going into offices, even going to see an occasional movie. But attending this event admittedly had caused me the greatest anxiety because I worried how strong I would be, to not let my guard down, and be exposed to someone unknowingly infected. This post is not about Covid19, but as soon as I felt comfortable enough, not only did the mask come off, but I did something I have not done in over four years, and that was only because the emotions of the moment were stronger than I could resist. I have been waiting to see so many of these other survivors for years, and to be reunited with others I have not seen even longer. Hugs were bound to happen, and did so in great abundance.

I think everyone would agree the weekend was too short, and not enough time to get everything done in between getting to meet everyone that up until that point, knew only through the digital world. Some arrived early, some stayed an extra day. But the main day was about the advocates who came to speak to all of us. There were personal survivor stories, lots of statistics, and doctors explaining a lot about the “why’s” that many of us long term survivors have the health issues that we do. I had a personal connection to two of the speakers, both doctors. For the first time, I got to hear how my one doctor found himself studying Hodgkin’s Lymphoma and survivorship.

I was also honored and humbled to join one of the two “survivorship” panels to answer questions alongside of my two medical heroes. I was asked to speak on advances in advocacy over the years. Many of my fellow survivors can relate to a time when we were on our own. So once the world wide web came long, and gave access to support via email, and then eventually social media among other resources, to end up in this ballroom gathered together at one great event, supporting each other, this is what advocates do, I would say the advances in advocacy have been as huge as advances in diagnostic methods and treatments for Hodgkin’s.

But I came to realize something. There is a difference between advocating on the smaller level, such as peer to peer, and the much greater scale such as the organizations that were represented and also spoke. They are the ones doing the research on our needs and speaking to our legislative branch of government for assistance financially and for other resources. And they are doing great things for us, though in the future. In the present, many need help now, and joining together with others in this hall, gave everyone a chance to share ideas, suggestions, and support. Most importantly, it is one thing to have a conversation online. It is another thing, to experience in person, that we are not alone after all.

There was a reality though, there were many who were not able to attend, some who had originally planned to attend. Long term survivorship is very uncertain. The room was filled with many of us, 30, 40, 50 years of having beaten a deadly disease, now living with the late side effects from the treatments that gave us those years. We do what we can to maintain good health, fix what can be fixed, but everyone expecting to see “tomorrow.” And unfortunately, there were so many, even recently, whose bodies could no longer handle any more trauma. This event gave many of us an opportunity to grieve with each other over the many other survivors passed over the years.

It really was a whirlwind weekend full of memories and information. Those who took part in planning and organizing it should feel proud of what they accomplished, and see the difference that it has made to those who atteneded, and the disire of those hoping for another opportunity in the future.

Jennifer – The Strength Of A Survivor

Over my 34 years of cancer survivorship, I have come across hundreds of fellow cancer survivors, especially those who battled Hodgkin’s Lymphoma, just as I did. I have gotten to meet them over social media or has often been the case, in person. And just like snow, and no snowflake being identical to another, the same can be said for us Hodgkin’s survivors. And just like a snowstorm, survivors interacting with other survivors, just like snowflakes combining to make something wonderful to experience (usually anyway), each of our differences make our interactions with each other, often a wonderful and at times, a life-changing experience.

This was Jennifer and her picture has been shared by so many who knew her. Because those who were able to know her, found this photo the best way to describe Jennifer without any words necessary.

Like many of the other survivors I connect with, Jennifer and I shared a lot of similarities from the close proximity of our ages at diagnosis (I was actually two years older than she was) with her being diagnosed two years before me. However, similarities between us would end, as she would have to battle Hodgkin’s multiple times, end up battling another cancer just a few years ago. And then of course, she had to deal with multiple late side effects from her treatments, similar to those that you have read me describe in other posts. In fact, just one other connection, she had her first heart surgery five years ago, on my birthday I just discovered.

Through all of her medical struggles, and this is what everyone who knew Jennifer will say about her, she was one of the most selfless people you could ever know. During any one of her health crises, Jennifer was always looking out for other fellow survivors in need of support, encouragement, or even just a “check-in” to see how someone was doing, all the while managing her own needs. And I mean, she did this all of the time. That is, until recently.

Jennifer had faced some additional health issues that finally left her unable to reach out, to offer solace and encouragement. For the first time in her life, all of her energy needed to be focused on herself and it was our turn, to throw all the support and encouragement we could in her direction.

Those of us who were treated for Hodgkin’s decades ago were treated with such harsh and toxic treatments, while no longer used today, left us dealing with devastating side effects for our bodies to deal with. And as is often the case, the body can only take so much trauma. But honestly, in spite of what Jennifer had gone through, unless she knew differently, there was never any indication that her mortality was near. She had so much fight in her. And though any further communication between us, basically involved me just writing to her, knowing that she would be too tired or perhaps for other reasons, unable to write back. But she would at least see the support I was offering her.

In fact, just around the end of March, we actually exchanged text messages about her latest health challenges, which mirrored one of my health issues, dealing with sepsis. It seemed like she was finally turning a corner on her way to finally overcoming such a challenging period with her health. But more communications would come through one of our other survivors (one of us often acts as a liaison so as not to bog down family members) that Jennifer would have more challenges, I don’t think any one of us would have ever thought this would happen to Jennifer, of all survivors.

And it is so clear the impact that Jennifer had on so many of us. Her picture, the same one as this post, placed on their pages with their tributes to Jennifer, everyone sharing what Jennifer meant to each and every one of us. It is easy to get lost with all the words from us survivors, that Jennifer was much much more than just a cancer survivor. She was a loving wife, mother, grandmother, and loved her animals. It was only form her obituary, I learned of her work in law firms and as a teacher’s assistant.

As for her advocacy for herself and for her fellow survivors, her efforts, in parallel while she battled her own health emergencies, often made every effort possible, to teach anyone who was charged with her care, the extra attention necessary for Hodgkin’s survivors with our late side effects.

For all the good that Jennifer did, and for her never ending smiles, it is not lost, that in spite of her decades of survival, she would pass away at the age of 56, her body simply unable to take any more trauma. And speaking only for me, though I am sure others feel similar, Jennifer, like most of my fellow survivors who have passed, was younger than me. And as it often happens, in spite of all the surveillance I undergo for my late side effects, it cannot be helped to wonder how much more my body will take, and what if anything would be the catalyst.

Again, like many of my fellow survivors, we were all set and excited to get a chance to meet Jennifer in person in just a couple of weeks, hoping that her health had turned for the better. Sadly, it had not.

For me personally, I will miss Jennifer’s never ending support and encouragement that she offered me over the years with my health and the wonderful support she gave to me as a father for my daughters. And her smile, just like her picture, it just never ended. Even now, all who knew Jennifer, will always remember that smile, and her spirit will still be there for each of us.

On a final note, there are many “younger” or “newer” survivors who may see this tribute and all of a sudden develop an anxiety of futility, as in “does this mean my cancer is only the beginning?” No. As I mentioned, and Jennifer would be the first to agree, the treatments used today, while still difficult and toxic, are not as harsh as they were decades ago, and surveillance is better following the treatments. But it is the follow up care that survivors like Jennifer, myself and so many others have tried to bring awareness to, the body has gone through so much, and even if just through a primary care doctor, survivors need to be watched just in case, and it is not definite that any will, but just in case an issue should develop, it is better to be on top of it, discovered early, before it gets too bad to do anything about. Again, it does not mean that anything will develop, you just want to be ahead of it.

I am certain Jennifer would agree with me on that.

Trip Or Treatment

(image from Google images)

Trick or treat. Trip or treatment. Two very similar phrases, each with something in common, but each with very different consequences. Every October, children traverse through their neighborhoods to fill their buckets with sweets and treats. I do not know anyone who does not like to travel or go on trips. If you dare to defy the miniature costumed humans in their quest for chocolate booty, you risk the wrath of a trick, a potentially messy and inconvenient assault.

But when it comes to cancer, making any decision that will impact the start of treatment, or delay treatment, is likely to be more than just inconvenient. It could end up being a harmful mistake, potentially fatal.

Two stories came across my news feed recently, both involving a conflict between treatments and travel. Now before I get into those posts, I want to make perfectly clear, treating Hodgkin’s Lymphoma, and likely many other cancers, time is important. Important because you want the best chance at long term remission, which means diagnosing the cancer as quickly as possible, and getting started on treatments sooner than later. There are any number of things that can be interrupted when you are told you have cancer. One thing I will tell you about cancer, it is not fair. Cancer does not care what you are in the middle of doing. Cancer does not care how old or young you are. Cancer does not care how nice, kind, and generous a person you are. And yes, cancer does not care if you had another cancer before. There is nothing fair about cancer.

In post number one, someone has just gotten diagnosed with Hodgkin’s Lymphoma. They are already assuming this is not something that will get taken care of overnight. So they realize, that in less than two months, this person is supposed to be going away on a cruise. Of course there are so many thoughts running through their mind as the trip was paid for, not likely to be refunded (cruise lines are not known for being understanding that way). Of course the person is wondering if they can put off treatments until after the cruise, or if treatments can be worked around the cruise.

In post number two, an individual is in the middle of treatments, and as common and expected, dealing with a multitude of emotions from frustrated, possibly depression, just looking for some sense of normalcy, and at the time of the post, feeling quite well in between treatments, wants to take a mini vacation to a fairly populated resort before his next treatment.

Both of these situations are quite common, and the questions of whether it would be okay to delay or not, are quite understandable. But just for the sake of argument, I am going to throw in a fictional, yet realistic third scenario (I refer to it as fictional as I am not referring to anyone in recent time). All too often, some women get diagnosed with Hodgkin’s while they are pregnant. Now clearly, this situation, and I have seen it discussed many times, does not have simples answers as to the impact on treatments, for the sake of both the mother and the baby. Sometimes, difficult decisions need to be made.

But in the first two situations, the decisions to delay treatment to complete something recreational should seem simple enough. Yes, there may be pressure due to having spent major amounts of unrefundable money in advance, and of course there is the anticipation of having looked forward to the trips for however long. But with Hodgkin’s Lymphoma being one of the more treatable cancers, especially when caught early enough, and treated soon enough, it is a very dangerous role of the dice, to delay treatment just to go on a trip. No one knows just when that moment will occur, that you can no longer go back with a decision that you must now live with, and yes, possibly die.

My own experience, I was lucky. I made the wrong decision. I was diagnosed with Hodgkin’s Lymphoma just six months before I was supposed to get married. My oncologist made the mistake of giving me all the options at the beginning, based on what stage would be determined. He had not realized how hard of a fight I would put up to make sure my wedding went as planned, especially how I would look. Yes, I did not want to look like a cancer patient, sickly, bald, like the stereotypical cancer patient.

The options that I was given were 30 treatments of radiation, of 6 months of chemotherapy. Both would have a good chance of putting me into remission. The doctor’s opinion was that I should go through chemo first, then radiation because I was staged at 3b (stage 4 is the worst as there is cancer involvement on both sides of the abdomen). And there it was, six months of chemotherapy would run right into my wedding. I asked him if we could delay until after the wedding, he was concerned that would put me in a more serious condition, unable to get into remission. He did say that radiation alone had a chance to put me into remission, but he still felt his opinion was best. But for me, I would be done in 30 days, and more importantly, for my wedding, I would not look like a cancer patient.

I did the 30 treatments, and had recovered well enough in time for my wedding. More importantly, I looked completely “normal” (pictured with my grandmother). Best yet, the radiation alone put me into remission. There would not be any chemo in my future. I would go on my honeymoon with my wife, and return for a scheduled follow up scan.

That is when I got the news I did not want to hear. My scan revealed “new” disease below my abdomen. This was not a relapse, but new disease. Radiation had gotten everything above the abdomen, which was still clear. Chemotherapy likely would have gotten this area had it been given. Now I was faced not only with six months of chemotherapy, but the doctor now felt an additional two months would be needed for long term remission (or additional radiation). Having guessed wrongly, and admittedly for foolish reasons, I went for the full eight months of chemotherapy. And yes, I ended up looking like a stereotypical cancer patient. But do you know what else? I am also in remission 34 years now.

So I understand the dilemma that two of the above three situations face. For the pregnant situation, that is clearly at the doctor’s decisions to ensure the safety of the mother and the baby. But for those with trips planned, to unnecessarily be exposed to any illness (Covid is still an issue among other illnesses) trapped on a floating petri dish, or take a morale boosting trip to a heavily populated resort again exposed to any number of people who did not stay home if they were sick, could result in a devastating decision to delay treatments, and I do mean devastate, and the consequences may not just end there if remission cannot be reached because of the delay.

As if my “wedding” decision was not bad enough, approximately around treatment number seven of eight, I wanted to go skiing. And I asked my oncologist if I could go skiing. He told me that I could, but to keep in mind, that as I would be dressed warm, and would obviously sweat, I risked catching a cold, or worse, something from others while inside the lodge. Seeing how I made one bad mistake already, when my doctor knew best, I heeded his warning putting off skiing until the next year. But don’t you know, just prior to my eighth cycle, I caught the flu from a co-worker, and my final treatment was delayed two weeks. It was devastating.

So just as in choices between rewards and consequences of Trick or Treat and Trip Or Treatment, the rewards should be too good to give up. Take it from personal experience. Especially if you are hoping to have long term remission. You want to do everything possible, and that includes the best treatment options, as soon as possible.