Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Studying After The Test


We have all been waiting for the encouraging news when it comes to vaccines and availability against Covid19.  Now to be clear, the three vaccines that we do have, that were discovered in record time, are not clinically proven.  They have not gone through the entire study process that science normally takes.  Our country simply did not have the time wait to get these shots into arms.  And because of that, these vaccines, research “not completed” yet, have been given “emergency use authorization,” allowing the well-hedged bet, a great risk to take.

At least for many.  Those in that group, based on the limited studies, were normal, and healthy individuals.  So, as long as you were in good shape health wise, you will be good to go.  As for the rest, well, we should be okay too.  That will be figured out eventually, but in the meantime, everyone is being encouraged to get the vaccine.  How important is this vaccine?  The last time, we dealt with something so tragic, without a vaccine, this is an image those in generations before me will never forget:

Polio was a virus that attacked the spinal cord, causing paralysis, transmissible from person to person.  Not really known for its lethality, the images of the twisted bodies of survivors from polio, are those that witnesses will never forget.  The last transmissible case occurred back in 1979 due to the fact that we have a vaccine for it (this according to the CDC).

So, with a rapidly contagious and lethal virus, which killed over two million people world wide, over 500,000 Americans, understandably, treatments and vaccines were needed sooner than later.  We are at the “sooner” now.

Here is what we know.  Two of the vaccines have 95% success or higher in preventing hospitalizations and death, and the third though having a lower percentage, still, when compared to other vaccines, is still very successful.  But here comes the bad news.

First, the studies have not shown whether the vaccine will prevent anyone from “carrying” the virus.  In other words, you might not get it, but you could get someone else near you sick.  The other factor, the length of time that the vaccine is only “known” to work for, is three months.  After those three months are gone, there is no study for showing how much longer the vaccine will last.  That is based on the data right now.  Right now, the signs are promising.  But we just don’t know.

This is assuming you are one of the healthy people like those studied so far.  But what about those who have compromised immune systems or pre-existing conditions like several issues that I have.  There are no studies done… yet.

Here is the good news.  An article released last month by the University of Birmingham (in England, not the US dammit), has begun the OCTAVE trial, funded by the Medical Research Council, to study immune responses to the Covid19 vaccines by those with compromised immune systems, including those with cancer.

I stated a few weeks ago, the difficult decision that I made not to currently get vaccinated.  After speaking with several of my most trusted doctors, who were conflicted among themselves what I should do, and would I benefit, that I was left with my gut instinct, based on what I knew about my health history.

Historically, because I have no spleen, I have a difficult time building antibodies without having booster shots of vaccines.  And it does not appear to make a difference which vaccines.  Some that I have had, once thought to be lifetime, I end up with multiple boosters.  And here lies the problem.

With no studies done yet, there is no data on my ability to get a booster, let alone be able to tolerate one (or more).  There is no protocol to test for the antibodies to get a booster.  And finally, there is no protocol to actually get a booster if you were to indeed need one.  What I do know, is I am likely to be in this situation, and it needs to be studied before vaccination becomes an option.  For that, I will say “thank you England.”  At least you are doing something.

The US is not standing by idle.  Those studies that have not been completed so that the vaccines can be officially approved?  They are still on going, either in the 2nd or 3rd stages.  Data will come producing important information like “how long will immunity actually last?”  Another important piece of information needed, that has not been discussed, and trust someone who knows because he has been there, being experimented on, data needs to come out on potential long term side effects from the vaccines.  Sure my treatments 31 years ago cured my cancer, but they knew nothing about the side effects I would deal with decades later.

Clearly, I am not a scientist, so my decision, I am not an anti-vaxxer at all, is based on a hunch.  That is, until the American Society of Hematology published a paper toward the end of the year, addressing questions about the Covid19 vaccine.  For those unfamiliar, hematology is the study of blood, but to those of us who have a history of cancer, we know this study very well.

https://www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines

This is the link to the actual article.  But in summary, there were two questions that stood out to me.  What vaccines are approved for immunocompromised patients?  Why might some patients not respond?  The entire paper is quite interesting to read.  But in the end, until the data is conclusive, the advice is still the same.  It is up to the individual to decide based on their need.

Some need the vaccine to be at work.  Of course there is the need to get kids back in school.  There is a strong desire to get back to some sort of normalcy socially.  And some, will need the vaccine simply not to die.

It is not an easy decision for me, and not one I have made lightly.  And yes, while some still like to argue, “but they can’t seem to get their answers right or straight.”  Yes, that is what happens when we are dealing with an unknown.  There will be mistakes along the way medicine looks for the perfect way to deal with Covid19.  Until then, just as success came with prevention for Polio, measles, and others, science will find a way out of this for us.  But it has only been a year.

Heartfelt Words From A Fellow Long Term Cancer Survivor


I shared Jessica’s story a year and a half ago here on Paul’s Heart.  It was titled “Jessica, The Mermaid That Beat Cancer 4 Times.”  She is referred to as a mermaid for several reasons, most notably her love for water, and the fact that she works in water related physical therapy and fitness.

Jessica’s story is a compelling one, as it began when she was just eleven years old, with the diagnosis of Hodgkin’s Lymphoma.  You can go through the search engine to read the full story that she wrote herself here on Paul’s Heart.

But Jessica is back, with a new guest posting.  Recently, she penned a heartfelt letter to “a doctor”.  This letter is written by a cancer survivor, Jessica, to “any” doctor who faces patients like her, myself, and so many others.  She expresses so many frustrations that we all have when dealing with doctors who either just are not familiar with our health issues, or unwilling to learn about them.  But instead of me explaining the letter, hear it from Jessica herself.

Dear Doctor

Dear Doctor, ( an open letter from a survivor)
You don’t know me. Yes, you’ve read through my medical records and I suppose you have been shocked, amazed, overwhelmed or rolled your eyes at the immensity of my profile and how difficult it will be to have me as your patient. But you are seeing the diagnosis I’ve had. You are looking at my pathology reports. You have noted all my surgeries and my late term side effects from my four bouts with cancer. But you don’t know who I am. You don’t know how hard I’ve fought and the fears I have had and the many glorious moments I’ve been grateful for nor do you realize the tremendous anxiety I have gone through after endless biopsies and cat scans and blood tests. You don’t know me. You assume that I should just be grateful that I survived. You don’t know that with survivorship comes tremendous overpowering stress. With survivorship you learn to live a very different life, one that can be moment to moment, event to event, doctor appointment to doctor appointment. Maybe I will have three months where I can truly live in the regular world that other humans who haven’t had a life threatening disease live; being somewhat carefree and not afraid of seeing a lab coat or a message from my doctor on my answering machine. You don’t know me.
When I enter your office you come in with my paperwork in hand. You are astute at your craft. But you don’t know how to talk to me. I am a survivor but contrary to your belief “ you’ve been through this before so you should be used to it by now”, you are wrong. Every visit, every test, every “talk” I become more weary. Yes, I am thankful for life but my life is precarious, I walk on a pond that has a thin veil of ice over it. I’m unsure if any step I take will make me fall through and into the murky water. You don’t know me. When you share “ you’re one of the lucky ones, my cousin had Hodgkin’s Disease and her ovaries were fried from the radiation” isn’t something to joke about or light hearted humor. You don’t know me. Giving me pity and saying “ you poor thing, I don’t know how you do it” isn’t what I want to hear as I sit trembling on my the exam table waiting for the doctor coming in. You don’t know me. Hearing you tell me that “ if it was me I would have probably given up a long time ago” makes me feel like a freak and that my fight in your eyes wasn’t worth it. You don’t know me. When you approach me but don’t recognize my pain emotionally you are not being a quality clinician to me so please don’t share with me that you are “doing your best”. You don’t know me. When you enter the room with my life on paper and say “ wow, this is like war and peace”, you make me feel guilty for my survivorship. You don’t know me.
So please Dear Doctor, when you take me on as your patient think a little more about what a SURVIVOR goes through, what it truly means to be a survivor. Your words towards us as a patient should have the same strength in them that we as survivors have to continue with on our journey. You don’t know me, but I’d like you to.
Sincerely,
A cancer survivor

31 Years, An Odd But Very Important Milestone


March 3, 1990, I woke up that morning from the most challenging time period of my life (at the time any way).  This day, just following breakfast, I took the last of my oral chemotherapy drugs (having finished the IV part the day before).  I was done with my nine months of chemotherapy (originally scheduled for eight, but low blood counts stalled me a month) for Hodgkin’s Lymphoma.

That was thirty-one years ago today.  Unlike last year’s anniversary, which I definitely celebrated as a milestone (30 years), actually, thanks to Covid19, was the last thing I celebrated before mitigation efforts were enacted, I am not making a big deal about “just another year” until I hit my next recognized milestone of forty years, which to be honest, my goal is to hit fifty years.

But today is a milestone for a different reason.  It was a time I was told not to expect to see, not just from possibly dying from cancer, but issues related to the side effects from the treatments.

I was told that due to the toxicity of my treatments, it was unlikely that I would be able to have children.  Not something a newly married twenty-two year old wants to hear (or his fiance).  And back in 1990, there was not much said about options to becoming a family.

Science would rule out the possibility for me officially, as I call it, “no chocolate chips in the cookie dough” how I explain it when mixed company is around.  A decade later, science would take another crack at me, after learning how to possibly reverse said infertility issues, but came up blank again.  One final option to consider, was adoption.

Unfortunately, in the United States, we like to discriminate against people, for any reason.  If there is an opportunity to tell someone “no,” and crush a hope, there are just too many willing to do it.  And so, because of my health history, even if ten years earlier, adopting from the United States was a “no,” because I had cancer, a long time ago.

And then things changed, an opportunity coming from the last place I would have ever thought, and from the farthest reaches, China.  The international program recognized that I had a cancer history, and asked only one concern, “will you live an expected, normal life?”  It had already been twelve years at that point, and I was healthy, no sign of my cancer.

In eleven days, I will recognize the seventeenth year, since my oldest daughter was placed in my arms.  I have already recognized the fifteenth year for my younger daughter.

I am not necessarily recognizing the seventeen years as the milestone, but this month is going to recognize a bigger milestone, as my older daughter, will turn eighteen.  I will then be a parent of an adult child!

Again, this was a day I was told never to expect to happen.  And I have been blessed this way twice.

How I hate being told what I can and cannot do, or what I will or will not do.

Just as I had been advised that I may not see parenthood, in April of 2008, my daughters almost lost their father.  One of the late side effects from my treatments had crept on me, up until the point I had been diagnosed with a “widow maker” level heart blockage.  I had emergency open heart surgery to save my life within thirty-six hours.

This was the time period that would change my life forever.  It was discovered that I had damage from my radiation and chemotherapies from back in 1990.  And it was likely there would be more.  The problem was that even in 2008, there were hardly any doctors that knew about these issues and how to handle them.  And then…

I would meet the doctor that would change everything.  He was my needle in a haystack, having been found several hours away at Memorial Sloan Kettering Cancer Center in Manhattan.  This doctor, and all who work with him, specialize in the late developing side effects from treatments.  At the point I met him, he had already been researching this issue for over three decades.  I found the best doctor for these issues I possibly could have.

Together, he reviewed what he could of my health history, as half of it had been destroyed by fire (according to my former oncologist – fancy way of saying they incinerated my records).  He assembled a plan to research all potential issues, some based on what he confirmed with my remaining records, and then assumptions for conditions he could not confirm from medical records, but rather common protocol back in 1990.

The bad news was, these issues are progressive.  As he explained to me, he cannot reverse what is happening to me, for any of the issues, and there are a lot, that would be discovered.  But he felt, he could help manage them, and even slow down the process by recommending certain therapies and changes in lifestyle.  And then he hit me with this,

“My job, is to help you see you children grow up, graduate from high school, and college (if they chose, and I hope they did want to), possibly get married, and perhaps, give me grandchildren.”

As my children were of the ages of two and four at the time, becoming a grandfather was definitely the last thing that I thought possible.  To go that far, would mean that I would have to have survived my cancer at least another twenty or thirty years.  I just could not get my head around that concept.  But I liked his thinking.

Each milestone I would reach in my survivorship, I convinced myself that my doctor not only knew what he was talking about, but I was definitely going to get to see that time period in my life.  And it will be great when that happens.

I would face even more health hurdles along the way, defying the efforts to help me reach my goal of becoming a grandfather, waiting to see what my new title would become… Pappy?  Poppop?  Grandpop?

Two battles with septic aspiration pneumonia.  Another heart surgery.  And most recently, a surgery to one of my carotid arteries, blocked severely enough to risk a stroke.

It was one thing to be told, I would likely not become a father.  It is totally another to face opportunities that would strip me of the most important loves of my life, my daughters.

Soon, my older daughter will turn 18, and my younger daughter, not far behind.  Together with my doctors, I am going to achieve that goal.  So, it may be an odd number to recognize for an annual anniversary, but my daughter turning 18 in my 31st year as a survivor of Hodgkin’s Lymphoma is a pretty big deal.

 

 

 

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