Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

20 Nov 2024

36 Years. How Is This Possible?


The year is 1988. Popular music back then was “Faith” by George Michael, “Dirty Diana” by Michael Jackson, “The Flame” by Cheap Trick, and “Nothing’s Gonna Change My Love For You” by Glenn Medeiros (whose daughter loves trolling him on Tik Tok). Chuckie scared the crap out of us in “Child’s Play” in the movies. “Cheers” was the television show to watch. The price of gas was $.90 per gallon and a bottle of Coke was $.35 for a 16 ounce bottle. I remember everything from back then, clear as day.

But there was something even more memorable that occurred thirty-six years ago this week, I was diagnosed with Hodgkin’s Lymphoma (back then it was called Hodgkin’s Disease). The week before Thanksgiving and the start of the Christmas holiday season, and in less than a month, my birthday, I was faced in the fight of my life, cancer. I will not rattle off the entire history as it is not pertinent to this post. I have written enough about what happened and how I got through it on this blog, as well as publishing my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, available on Amazon (see the link below).

https://a.co/d/2JRZsZ3

Instead, I want to focus on the progress that I have been fortunate enough to have witnessed over the last four decades. Cancer patients often are led to believe that there is nothing to really look forward to much beyond a magical five-year mark of remission. It is almost as if, once that 5th year hits, and the cancer patient gets “discharged” by the oncologist, the rest of survivorship is unknown. And until recently, it was.

I almost feel like a time traveller, having travelled into the future from the years 1988-1990. I have seen the progress of diagnosing one of the more treatable forms of cancer, with a remission rate well into the 90% range. Back in 1988 (and beyond), biopsies and barbaric surgeries and tests (the staging laparotomy and the lymphangiogram – look them up to see what is no longer done) were used to diagnose and stage the Hodgkin’s. Today, a scan or a combination of scans are used, no longer requiring recovery time.

With such a high treatment success rate, it may not make sense to work on better and safer treatment methods, since the success is already there. But the truth is, the extreme high dose level of radiation that I was exposed to, and the extremely toxic chemotherapy drugs that were used on me, as well as most patients during that time, and previously, were known to be just as lethal as allowing the Hodgkin’s to just run its course. So, we were given the treatments, as what did we have to lose? Medicine would learn over the decades, that they could have the same success rate of remission, if not better, by using less radiation, and lower dosages of certain drugs, and omitting other drugs. The treatment plan used on me, is no obsolete. And the treatment plans today, as I said, are producing similar or better results of remission, just with less toxicity and lethality.

Major changes in support have also occurred over the decades. When I went through my Hodgkin’s, there was no Facebook or social media. I was not able to connect with anyone else who had gone through Hodgkin’s. I had a therapist I was able to talk to, but that was it. Today, there is a world wide web, connecting people with Hodgkin’s all over the world, talking about topics not just Hodgkin’s directly, but all of the sub issues that arise because of the cancer, such as financial support, fertility, and employment. In spite of family and friend support, please do not take this the wrong way, it is often not enough, because there is no way for family and friends to truly understand what we are experiencing. Today, there is no reason for a cancer patient to feel alone.

And perhaps the biggest progress, and maybe even the most important progress, is since Hodgkin’s survivors are living longer (I am in remission 34 years), some into the 40th and 50th years even, medicine has learned that for some of us, survivorship has come at a price due to the extreme treatments that we underwent. Again, I have documented often on this blog and in my book, the various late side effects that I developed as a result of my treatments. And as I always stress, NOT EVERYONE DEVELOPS THESE ISSUES! But because there is no way to know who will and who will not develop late side effects, it means that a cancer patient’s health needs to be watched, even after hitting the five-year mark. An oncologist should remind a cancer patient to continue seeing their primary care giver at least annually, using a guideline established by the oncologist and the treatments undergone, to figure the surveillence needed and how often, first establishing a base line measure for body systems such as cardiac and pulmonary. Information on potential side effects can be found on the Children’s Oncology Group page at http://www.survivorshipguidelines.org/ and also at Hodgkin’s International at https://www.hodgkinsinternational.com/ . I am not sure what the statistics are, with how many of us are impacted by late effects, as medicine has never really studied survivorship in this detail. Many may never develop any issues. Some may never realize issues they have are related to their survivorship. The point is, progress, driven by my fellow survivors are doing what we can to get the word out, to take care, and follow up for these potential issues as I deal with.

These thirty-six years have not all been about cancer. Sure, as an advocate, I made an active choice to help and support patients and survivors, albeit on a micro level, one person at a time with issues such as information, support, comfort, and direction. But I have gotten to experience so much in my life, not only not having anything to do with cancer, but in spite of having had cancer. My life has not gone the path that it was headed back in 1988, and there is no way of knowing how it would be today had I not had Hodgkin’s. I can tell you, my life has gone the way that it was meant to. It has not been smooth by any means. I had a great career. Took two swings at marriage (both ended in divorce). I am blessed with the most wonderful daughters a father could ever ask for. My daughters missed my Hodgkin’s days, but have been there through all of my late side effect issues and are the main motivating reasons that I am still here today. I have so many memories over these thirty-six years, again, some not so good, but others… wow. I have been all over the United States and twice travelled to China. I had the best dog for nearly fourteen years, who also played a key role in my healing.

The only thing about survivorship that is scary, is not knowing how much longer. As I said, I know many survivors well into their 4th and 5th decades. I know many “newer” survivors having just reached remission or some hitting their early milestones, one year, five years, and ten years. The hardest thing about my survivorship, are the many survivors that I have had the blessing of meeting, some are no longer here today. I think of them as often as I do the other survivors that are still with me. No fault of their own, their bodies just could no longer take the trauma that was done to their bodies, whether undergoing corrective surgeries, or perhaps a spontaneous event, left to be handled by doctors without the knowledge of how to handle our unique medical histories and exposures.

As I mentioned, I have a birthday during this season, next month. And I expect to celebrate that birthday, with my daughters for the first time in eleven years (because of the divorce), and I hope to have many more. Longevity does not bode well on the paternal side of my family, my father passing at the age of 70. The late effects and their impacts on my body may effect my longevity. We do not know. But I do not take any day for granted. I go to bed each night, with plans for the next day. And when I wake up, I plan on taking care of everything I set out to do the night before. And if for some reason, it does not happen, then there is nothing I could have done about it.

But my plan is to reach not only my 35th year in remission milestone, but the 40th, and perhaps the 50th. And if I am able to do that, not only will have more progress to share in the world of Hodgkin’s Lymphoma, but I will have many more experiences to share of my life as a father, and perhaps grandfather.

Here’s to 36 years!

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
19 Sep 2024

To Work Or Not To Work During Cancer Treatments, That Is The Question


If there is one word that I would use to describe myself as an employee, or at least I used to be able to in my healthier days, is reliable. In my nearly forty years of employment, many of those years I earned awards for “perfect attendance,” taking time off only that was granted for personal time or vacation time. But during the time that I was diagnosed with Hodgkin’s Lymphoma back in 1988, my reliability was put to the test. I was able to arrange most of my surgical appointments for biopsies and such not to take the entire day, with the exception of one. The challenge would be during my treatments.

For my radiation treatments, thirty of them over six weeks, would occur Monday through Friday and off the weekends, which took all of a total of five minutes on the table for the linear accelerator each appointment. I missed only the first half hour of work, which I made up at the end of the day. With my chemo treatments, it was a little more complicated because I did not know how my body would react to the treatments, but I was able to arrange my treatments to be given Friday afternoons. I would leave work a couple of hours early, have my injections, and have the weekends to recover. This would be a cycle of two weeks on treatment, two weeks off which I would work my normal hours. I missed no other time, something I know my boss appreciated.

Up until my cancer diagnosis, I would describe myself as someone who got along with everyone. I say “up until” because something changed and I do not think it was with me. I noticed some of my co-workers had begun grumbling around me, and it had gotten back to me. I felt confused, and quite hurt. After all, I was the one dealing with cancer, yet they were acting as if they were the ones being impacted. I was actually being accused of “getting favored treatment”, though no examples were ever given. Jealousy? Envy? These feelings would escalate throughout my treatments. I never understood why. I do know, it was an extra burden on me, dealing with cancer, as if I did not have enough to deal with.

A question that comes across my social media feeds often, is “do I work during my treatments?” Back in 1990, after ending my treatments I honestly believe, had I needed to do it all over again, I likely would have opted not to work rather than go through the stress and abuse I felt was thrown at me. Of course, there was one issue standing in my way of having that option, money. I was married then, and we had rent and bills to pay. Giving up my salary would have left us financially in such a hole. Not always practical in these days, I usually tell cancer patients asking the “work” question, unless you have five to six months savings stored away to rely on, you are going to need to do all you can to earn an income.

There are some other options available to enable at least some assistance. For instance, when it comes to Hodgkin’s Lymphoma, and any blood cancer, the Leukemia & Lymphoma Society has grants available to assist with direct expenses related to that cancer. And it is likely that other cancers have organizations that provide similar financial assistance. Social Security Disability is another possibility, though not as likely. There are restrictions, and unfortunately the process is time consuming, so, unless you started the process prior to even knowing you had cancer, you are likely to complete treatment before you even got an answer either way. Also, the definition and description of what keeps you unable to work are difficult to meet. I am unfamiliar with the option of coincidentally or conveniently being “laid off” from work, able to collect unemployment compensation, other than the need to have worked enough time prior.

For me personally, I wanted to work. If for nothing more, my work day would provide a much needed distraction that if I sat at home all day, my cancer would be all I would think about. Of course, I would much rather have preferred not having to constantly defend myself at work, for things said of me that were not only untrue, but for everything else I currently had no control over. My focus on having cancer actually ended up worse remaining at work. Would I do it that way again if I had to do it all over? I really do not know.

There are other factors to consider in whether to work during treatments. Radiation and chemotherapy will likely kick your tail with fatigue. There will be good days, and there will be bad days. Overdoing it on good days can lead to crushing bad days. Finding balance can be difficult. The important thing is to give yourself a break when fatigue hits, especially emtionally because your body is going through a lot.

Finally, and probably the most important factor to consider whether to work or not, is exposure risk. What does this mean? It is something you have no control over because you depend on others to make the right decisions, and often times they will not. I am talking about co-workers who come into work sick, or another example would be teaching a class with students who come into school sick. The Covid19 pandemic brought major attention to the ramifications of contracting an illness with an upcoming treatment. And it does not matter if it is Covid19, the flu, or strep throat, an infection, contatgious or not can be devastating mentally to a cancer patient when you are told you cannot receive your treatment as scheduled because blood counts are too low. This happened to me during my second to last treatment, delaying the date I had written on my calendar as my goal to finish treatments, and it did not happen. And if it were something to be contagious, the oncology office will not want to risk the other patients health by having you come in.

But it never fails, there is that one co-worker that comes in, nose-running, coughing all over the place and everyone. To a cancer patient, this creates the dilemma whether they themselves will have to leave work for their own protection due to the ignorance of the co-worker not staying home. I know this first hand. A co-worker had come in, announcing that she had strep throat, which is highly contagious. I protested to my boss about my risk and was told, “what do you want me to do? She doesn’t want to go home.” So I made the decision to go home, which ended up being without pay as I had already used up my sick pay at the beginning of my Hodgkin’s journey. But I did not come down with strep, which could have been very bad for me on several levels.

I would like to think that all of these negative behaviors would have improved over 34 years, but I can say that I at least have not seen that. When I had to have emergency open heart surgery back in 2008, initial concern by my co-workers soon turned to petty jealousy and envy by some of my co-workers, consumed that they felt I should have been returned back to work sooner than what my doctors were directing. So, I doubt there would be any mercy for cancer patients either.

I have given you a lot of factors to think about when it comes to working during treatments or not. Only you are going to know your personal situation, and even though you may know the potential for any co-worker conflict or not, it still may be unpredictable. But you need to do what is going to be best and safest for you, the goal to get through your treatments, and hear the word remission.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
14 Sep 2024

“Growing” Pains During Chemo


As I continue to try to grow “Paul’s Heart” to reach as many as I can, I took the leap and started a TikTok page several months ago, @paulsheart2022 . The page is titled “Paul’s Heart.” My plans with that page, as long as TikTok continues to function, has been to “journal” my journey over the last thirty-six years from the time I discovered symptoms, to my diagnosis and treatment of Hodgkin’s Lymphoma, and the thirty-four years of remission I have been blessed to experience. The videos are titled so you can go specifically to certain videos for convenience, and they last anywhere between four and ten minutes. Two of the recent videos I posted pertain to common issues that still exist today, and regardless if you are dealing with Hodgkin’s or any type of cancer. I generally do not like to duplicate my posts across social media, but these two topics I consider important to all who read them and are going through cancer right now, working while going through treatment, and dealing with bone pain. I will address the working issue in my next post here.

Understand this about chemo, its job is to destroy cancer cells. Unfortunately, in the process of doing what it is intended to do, it also destroys good cells, your red cells, white cells, all of them. Which is why a patient usually has a blood test done prior to beginning every treatment to make sure that the body is able to handle the next round of treatment or not.

In 1988 and 1989, if blood counts were too low, treatments would either be modified, altered, or perhaps even postponed, to allow the bodies cell counts to return to a safe level. Of course, the best chance at remission is to have treatments in full and uninterrupted. This interrruption did happen to me during one of my rounds of treatment, and it was devastating to me to have to delay my treatment even just a couple of weeks. Fortunately, it did not have an impact on my survivorship and remaining in remission.

As I began my advocacy in cancer support and advocacy, it was a few years later that I learned of a treatment to help increase a major culprit in treatment delays, low white blood cells. It was a drug called Neulasta or Neupogen. Though they are still used today, I am sure there are other drugs available and used. But the great thing is, this white cell booster method works and helps to keep treatment schedules on track. Again, this discussion is not just for Hodgkin’s patients, but for all cancers.

So where will all these white cells be generated by the drug? Where the body always builds its white cells, in the bone marrow. But there is an unfortunate side effect when too many white cells generate too quickly. It is a similar situation that some of us may have experienced earlier in our lives. Did you ever hear an adult say that you as a child had a “growth spurt” over a period of months, or recognized someone else who obviously did grow several inches in less than a year? Sometimes, growth like this can result in pain, hence where the term “growing pains” comes from. It is the rapid growth of the white cells in the bone marrow, in the bones, that causes these pains.

But for decades, as I talked with patients, who mentioned this bone pain following the shots to boost the white cells, most could never find relief, no pain killer from Tylenol to opiode would work. And it was by some chance, I met a patient about eleven years ago, who told me how he had dealt with this bone pain, actually preventing the pain. And it could not have come as any bigger surprise.

No, this is not an ad. I actually pay not to have ads on my blog. This patient had a regimen to follow to prevent the bone pain from ever occurring. But how does an allergy pill work to prevent pain? Drugs are approved and labelled to treat specific problems and Claritin’s FDA approval is as an antihistamine, allergy drug. Doctors aware of other benefits of certain drugs, can recommend or prescribe “off label” use of drugs, for a different use other than what was approved by the FDA. And in this case, bone pain related to boosting white blood cells, it is not only a game changer, but a huge boost to quality of life in one of the darkest periods.

I want to be clear, I AM NOT TELLING YOU TO TAKE CLARITIN. I am not a doctor. What I am doing, is giving you information, if it has not been brought up by your doctor, AND ASK THE DOCTOR. You might be surprised how quickly “of course you can take Claritin” comes out of their mouth. I experienced this myself, as I met with my father’s oncologist, discussing my father’s treatments for lung cancer. We got through the entire appointment preparing my Dad for what he could expect and how long, and the doctor never mentioned the potential for the bone pain when my Dad came for those white cell boosting injections. This would have been disastrous for my father. And then the doctor opened the door, “so do you have any questions?” I had waited the entire visit to bring this issue up… “will it be okay if my Dad takes Claritin for the bone pain?” Caught somewhat offguard by my obviously informed question, he replied, “of course,” and mentioned another name or two of other pain killers. My Father looked at me confused as to what I just did, but with the doctor agreeing with me, I just told my Dad, “trust me, we will talk about it later.”

Again, I want to be clear, I AM NOT TELLING YOU OR ANYONE TO TAKE CLARITIN. Take the information that I am sharing with you, and bring it up with your doctor. Chances are good they will agree. My father took a Claritin the day before the injection, the day of the injection, and the next two days after the injection, and my father felt no pain. It needs to be noted, if you do not start soon enough and stay on it, there is no getting on top of it at that point, just having to ride it out until the pain stops. Claritin works for most patients (there are some it has not), because as an antihistamine, it blocks histamine, a chemical that can cause inflammation and swelling in the bone marrow, which causes pain.

Again, regardless what cancer you may be dealing with, if a white cell booster is part of your treatment plan, make sure you address this issue with your oncologist.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects | Leave a comment

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