Paul's Heart

Life As A Dad, And A Survivor


I feel at the moment, like life is imitating art. The above video clip actually applies to this situation. The skit from 1994, featured actress Helen Hunt and SNL actor David Spade, as two flight attendants for a fictional airline, Total Bastard Airlines. The tone is set right from the beginning as the plane is landing and the pilot announces, “this concludes the safest part of your journey.” From there, passengers are rudely guided off the aircraft, neither flight attendant open to any other conversations or questions. Any attempt at such delay of departure, would result in the response “buh bye” from either or both flight attendants.

So a couple of days ago, I was feeling deja vu with this skit. While the skit clearly was parody, my situation was far from it. But the ending result feels the same. Especially when you are someone who has a slight cynical edge to his personality, like I do when it comes to large organizations and corporations. ESPECIALLY one that you feel personally connected to.

If there is one thing that frustrates most of us long term cancer survivors, if not all of us, is that we feel abandoned by science, medicine, cancer organizations, even the one that specifically uses the actual cancer we had in its name, Lymphoma, because when we need help, support, guidance, all too often, we have only peer support to rely on. Some of us are lucky in that we found doctors who do realize that there is more to beating cancer, such as surviving the treatments afterwards. At least now, again, courtesy of peer survivor efforts, there is finally an organization, non-profit, that does exactly just that, provides support, information, and guidance for those dealing with, or surviving from Hodgkin’s Lymphoma, called Hodgkin’s International.

But back to the “other” lymphoma” organization.

From the beginning of the pandemic, I have been clear that I have relied solely on information provided to me by my personal medical providers, a.k.a. doctors. I tolerated some trying to convince me that I needed new doctors because what I was told went against what some wanted to believe, conspiracy theories and flat out misinformation, to protect their political agendas and opinions. In the middle, was science, their efforts compromised by the relentless and merciless mortality of an unknown disease racing to get information out before all the lies.

And while the CDC, FDA, WHO, and every other scientist were looking for solutions for normal or “healthy” people, you had those like me, immuno-compromised, making me even higher risk, making my survival as urgent as the elderly that Covid19 was killing rapidly, the Leukemia & Lymphoma Society stepped up, performing their own study, a much smaller scale, on patients who either have or had a form of blood cancer such as leukemia or lymphoma. When vaccines became available, it was the LLS that had taken the time and effort to study how many doses it could take to establish immunity, and just how long immunity might last.

The rest was up to me. My doctors were clear. Do not get Covid19. If I did, with the condition of my heart and other issues, I would likely die. The orders were clear: wear a mask, wash my hands, social distance, avoid large indoor gatherings. You know the drill all too well by now. The last part of the mitigation was to get vaccinated, something I knew that I would have issues building immunity to based on other vaccines that I have received in the past. Bloodwork, known as titers, would be done before and after each dose to check for responses. That is how science works.

For me, it went as expected. 1st dose, no reaction to the vaccine. 2nd dose, just a slight reaction. It was the 3rd dose, considered a “booster” for the healthy people, that finally put me at a level of immunity that others had achieved with two doses. But bloodwork would show months later, the immunity did not last like it was for others. I needed a 4th dose to get my immunity back up, which bloodwork confirmed. Knowing my history with vaccines, especially this process, I know I am a candidate for dose #5, but how soon, and now which vaccine, even the upcoming new variant specific vaccine, would I need? And then what after that?

So I reached out to the LLS for my “what’s next?” I wrote, “I received my 4th dose early May, followed by bloodwork two weeks later. My question, will their be additional bloodwork, and will it have any impact on a decision towards a 5th dose?  And if a 5th dose determined, will I be waiting for the pending vaccine covering the variants that is rumored to be coming out?” In other words, with so much still to be learned about Covid19, and from known results of the study thus far, there are those like me, who clearly will need continued support.

This was the response I got. “Thank you for your participation and update. Unfortunately, we are not testing prior to fifth doses or after. Based on CDC guidelines, you should receive a fifth dose at least 4 months after your first booster. We are giving our recommendations as the CDC advised.”

In other words, “buh bye.” I am now on my own. The LLS know there are immunity issues, but this is where they get off.

Of course I know I am wrong for thinking that there was a potential gain to be had for us long term cancer survivors that nearly EVERY organization and most medical personnel have forgotten about (here comes the cynicism). This study was just to find out how the body reacted to both exposure to Covid19 and the vaccine. It does not make it sting any less the fact that an organization with the name of the disease I fought 32 years ago, the Leukemia & Lymphoma Society, still does not recognize or offer any substantial support or guidance for us. As I said, I am thankful for Hodgkin’s International ( because they are doing what others are not.

So, just as I do for other viruses and other illnesses, I use precautions and awareness of my surroundings and those I am around. I trust my doctors to order the right surveillance, recommend the proper vaccinations, and hopefully the ability to talk me into getting those vaccines. I have resumed what I would call my “pre pandemic” life with only one major adaptation, wearing the mask around others. I am literally able to do everything I was before and not contract Covid19, something just as lethal to me as pneumonia, meningitis, the flu, and actually, wearing the mask will assist to some level, protection from them as well. Because, in full disclosure, I do not get every vaccine recommended, and it literally is a judgement call on my part, taking only into consideration, my doctor’s opinions, science, and my gut. Not the media, not social media, and not what others tell me. I do what is best for me because I know what is best for me.

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