Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Playing Ketchup


Coming across my news feed yesterday, was some hopeful news in my world of dealing with Covid19 and the vaccine.  As I have previously stated, I support the vaccine, I believe in the science of the vaccine, and I believe it is critical in getting to the end of this pandemic.  But I have also stressed that I have made my own, independent decision not to get the vaccine at the present time based on facts available, rather, not available, and consensus of my doctors.

First, make no mistake, my cardiologist has made it quite clear.  Because of the nature of the virus, if I contract Covid19, I am likely to die because of my heart issues.  So I either need to avoid getting Covid19, or I need the vaccine.  And currently, there are three vaccines that appear to be leading to the end of this awful pandemic.

My hesitation is clear.  There is no research on those of us who have had “blood cancers,” like me, Hodgkin’s Lymphoma that show the vaccine having any impact on producing antibodies and no protocol if boosters are needed or even safe.  There is no research that shows the potential to have an impact on our immune system from the vaccine, making us more susceptible to other illnesses and the ability to fight those.  And finally, there is no research on long term side effects from the vaccine.

There has been no time to do the research on these questions.  But that is why there are vaccines out now.  Not to be confused, these are not FDA approved vaccines, yet anyway, as they have not completed their studies.  They are only approved for “emergency use authorizations.”  The rest of the studies have yet to be completed.

For most, “normal” and healthy people, the vaccine will provide at least some level or relief, especially mentally.  I believe we are starting to function again economically as we have learned to adapt in the days of Covid19.

But while we wait for science to catch up for those of us with immunity issues, someone is stepping up to at least help when the time arrives.  The Leukemia & Lymphoma Society has announced a partnership with a research platform, called Ciitizen, that will assist in collecting data from those who have had a form of blood cancer, and whether they have contracted Covid19, gotten a vaccine, side effects, and “long haul” issues, and more.  This will help many to decide for themselves, if the risks are likely or rare, and if it is a risk worth taking or not.

There will be some who will protest the collecting of this data as being intrusive.  If it matters to a person’s survival, you are going to need to get over this paranoia.

I have made my decision not to get the vaccine right now, simply because I have no data to support a decision to get the vaccine.  This registry, which patients will have access to, will provide statistical support to help make a more informed and scientific decision while we wait for the FDA, the CDC, and all the other agencies to “ketchup.”

For the full story, please go to the LLS website at:  https://www.lls.org/news/the-leukemia-lymphoma-society-launches-national-patient-registry-to-answer-crucial-covid-19-questions-for-blood-cancer-patients?fbclid=IwAR0nhbOTF-QClmDllNpoR2TTSbJ8S0ej_mO_X1dDiDEtv3_DA0l4nboYJC8

The Best Of You


I was sitting in front of the television one night, watching one of the award shows.  I cannot remember which one.  During an acceptance speech by, I cannot remember who, I heard the following words, “Life is not just about the moments, it’s who you spend them with.”  I was too concerned about the actual quote when I wrote it down, I figured I would remember who said it.  I did not.  Help.

I am sure winning one of these awards is an awesome moment, but it means nothing if you have no one to share it with, or worse, share it with the wrong person.  Another expression that comes to mind begins with “surround yourself with good people…”

Being an advocate, as well as a participant in the causes I advocate for, there are moments when faced with multiple levels of toxicity.  The key is not to absorb them.  Regardless of the many health issues that I face from my days as a long term cancer survivor, I take advantage of my good days.  Regardless of any disagreements I have with my former spouse, I cherish all the moments that I get to spend with my daughters.  It is not about the moments, it is who you are with.

Some wait for a health scare to make the conscious decision to release toxicity or eliminate stress.  Some go through a major event, and still are not convinced a change needs to be made.  For some, it just takes time to realize, that is what you truly want, inner peace.

On paper, there is a lot on my plate that I have to deal with, likely overwhelming for most.  And at one time, it led to high stress for me, as well as aggravating my health issues on an accelerated basis.  But recognizing the things I face, do I choose to obsess about them, and ignore all the good that is around me?  Or do I take the approach, “I will do what I can, and that is going to have to be good enough?”

One of the ways that I have dealt with this thinking, is to take a “prepare for the worst, hope for the best” attitude.  Why?  Because even being aware of the worst case scenario, takes away the surprise factor when it comes to emotions.  When faced with bad news, we often are rattled by our emotions, which leads to more bad things because we are not thinking straight.

An example, I am followed up annually for my cardiac issues related to my cancer treatment late side effects.  My issues are not about “will they happen?”, but rather “when?”.  As I go through each follow up, I go through my strategy… worst case, it is time for the surgery, best case, still waiting.  And I apply this to every situation that I face.  This allows me to remain calm and focused.  I know that if I need the surgery, there is nothing I can do about it, I need it.  Worrying will only make it worse.  I will be in good hands.

But it is important, to keep the “who” you spend those situations with.  As my daughters have grown older, they will soon take on a role, of educating themselves about my health issues, and I will have two very strong advocates along with those that already offer me support.  A far cry from what I used to have.  It makes a difference.  It is not just about the moments, but who you are spending them with.

A Tree With No Roots


I have no problem amusing myself.  Because my health often does not allow me to remain in one position for too long of a time, I often have many “irons in the fire.”  A recent project I have started up again, is my family lineage.  My father had given me documentation just before his passing, which allowed me to trace back nearly 150 years of his side of the family.

I did not know that much about my mother’s side of the family.  In spite of having a family tree project in school, information on the paternal side of my mother’s family was sparse.  I was able to go back several generations on the maternal side.

Until recently.  A project started by a cousin on my maternal father’s side has sparked a new interest for me.  There is actually information about that part of the family that I had not known previously.  There is some information that confirmed what I did know already.

I did not get to know my maternal grandfather very long as he passed just passed my first birthday.  All I knew about him was how I was drawn to him.  Now I know why.  As his obituary shows, he loved music.  I recall hearing an actual vinyl recording of him singing “The Battle Hymn Of The Republic.”  From that point, I was hooked into music.

From church choirs to school choruses and chorales, competitions, symphony choruses, cover bands, and karaoke, I found my place in music, singing.  I did also further music studies, including guitar and piano.

Music would take a bigger part of my life, during my battle with Hodgkin’s Lymphoma.

Have you ever heard a song that pops into your head, and automatically your mind takes you back to a specific time or place?  Mine used to take me back to fun memories such as an amusement park, or maybe an ice cream shop.  But because I spent so much time in a chemotherapy suite, I listened to a lot of music to get me through my treatments.  During my recovery and rehab, I listened to even more.

This is when I realized music was not only fun, but had healing potential as well.  Now, my singing also plays a pivotal role in assisting with my pulmonary rehab, a lot more fun than using the spirometer thingy I have.

But the best thing, my daughters have the appreciation of music as well.  And like me with my grandfather, they have heard me sing as well.

Anyway, it was during this search, I not only confirmed where I got my interest in music, but also shined a light on the other side of the family that I did not really know.  It was interesting and exciting.  Always looking for more grown up things to talk about with my daughters, I saw this as a good one.  And then it hit me.

With my daughters being adopted, there are moments that I have learned, extra sensitivity and attention are needed.  And this was one of those moments.  It is one thing to be adopted domestically.  There would be some glimmer of hope, if it was desired to trace and find where someone came from.  But being internationally adopted, there is a “needle in a haystack” chance of discovering this information.  My excitement could easily cause heartache, and I do not want that.

A favorite television show of mine growing up was “I Dream Of Jeannie.”  Typical story.  Someone rubs the lamp, a genie pops out… yada yada yada.  In this series however, the genie stays.  One episode had “Jeannie”, the main character, sad, because she did not know when her birthday was.  And due to that sadness, she had begun to physically fade away.  In spite of all her happiness that she had with her “master” and eventual husband, the lack of knowledge of her birthday proved powerful enough, it needed to be found.

This has always stuck in my mind with my daughters.  And up to this point, I have actually taken several steps to help them, should they ever decide that they would like to see if they could trace their past, perhaps even find their birth parents.  Research and investigations provided me with information on caregivers, foster parents, and locations.  My daughters are now aware that the information exists, should they decide that they want to go further.

And I have given them both my word, if they do decide to pursue finding their origins, I will do all in my power to help them both.  It won’t be easy.  But who knows what can happen in a decade or two?

But at this point, there is no reason to risk any kind of hurt to my daughters, with my research on my family from a geneology standpoint.  But on the family tree, they are on there, and so will their children, and so on.

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