Paul's Heart

Life As A Dad, And A Survivor

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.
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.




A Difficult Choice

This is a time that many have been waiting for.  There are those who have no intention of participating.  There are many who are unsure as what to do.

Full disclosure (what else is new with my posts?), if I contract Covid19, the complications from the virus would “kill” me.  That is not per MSM (main stream media) or any other propaganda.  That is per my cardiologist who is all too aware of the current condition of my heart, and the two surgeries that have been done to it, and now add my carotid surgery.  Include the fact that I have no spleen (asplenia), along with cardiac issues I have pulmonary issues from my treatments for Hodgkin’s Lymphoma.  I do have high blood pressure, and am diabetic.  I check off every box of vulnerabilities when it comes to Covid19.  Of all the viruses I have faced over the decades with my immunity issues, this one is the first one that I have received such strong advice to avoid at all costs.

I have taken this virus very seriously.  I had faith that the right things were going to be done with this horrific unknown, until the voices in charge were silenced.  And then, we just had to wait for a plan, for a treatment, for mitigation, for a vaccine.  The problem was, there was no plan.  We know this.  And if you dared challenge this strategy (or lack of), then another problem was created, you were perceived as being against the president.  With a virus that would eventually kill more people than three of our major wars combined, and we knew the potential for it, how could we let this happen?

The biggest war cry in trying to find something to treat Covid19 with was, “we just don’t know”.  But anything that showed hope, was to immediately be pushed as the “cure all”, without any studies.  And for the record, the ideas being suggested at that time, not an option for me, as the one drug caused cardiac issues (which I already had), and taking a steroid is not advisable for someone with cardiac issues.

We were given advice on how to be out and about, but even that had turned into a divide falsely on the grounds that again, it was a perceived attack on the president who did everything opposite of what experts advised to do.  Do you remember what it was like in school, to be expected to do the right thing, but looking around at other kids who were not going to do the right thing, so you did not also?  It is called peer pressure.

So, let me put it into terms that you can understand.  Covid19 was an unknown from day one.  Science is about trial and error.  There were bound to be mistakes and errors, but at no time, was that grounds to take the virus less serious.  The mitigation efforts we had were not perfect, and to this day still are not, but they are all we have, and there at least has been benefit to them, in spite of those who oppose them.

Masks do not hurt you.  If you get sick from one, chances are you are likely to not have had clean hands when you handled it, or perhaps that one time, you let your guard down.  But the truth is, the heroes in medicine wear them all damn day, many times in twelve hour shifts.  You can certainly wear one when you are around someone, but some won’t.  Peer pressure.  Has nothing to do with freedom.  A year into this, I am still free.  A person who opposes a mask is just worried they look foolish wearing one.

Social distance.  I for one am all too glad to no longer shake hands, hug, or greet with a smooch on the cheek.  I will not miss that.  But I would like to go to a movie or dine out, and I will some day, hopefully in the next few months.  And I do want my kids back in school physically.  The harm that has been done by their physical absence in class is not because of the virus, but because of the valuable time that was wasted right from the beginning in facing Covid19.  Again, if my childrens’ school district is any example, they will be back in school full time, and safely, with all the mitigations recommended by the CDC.

So that brings me to the final part of this nightmare, the vaccines.  We finally have three of them.  To be clear, I am not an anti-vaxxer.  But I do not believe in getting every one, but clearly, there have been vaccines that have been necessary to eradicate the illness and make sure we never dealt with those tragedies again.  Chances are, most of anyone reading this, does not know of anyone who had and died from polio.  There is a reason for that, the vaccine.  But if you have an older parent, they are likely able to tell you what it was like to see someone with, or die from polio.  And the comment will be, “I don’t ever want to see that again.”

You do not have to be one of the more than 500,000 families touched by death from Covid19 to say, “I don’t ever want to see a crisis like this again.”  That is what was said in 1918, and we learned nothing from that time period.  But now we have a choice, something we did not have a year ago.  Yes, we do not know if we can eradicate this virus, but the maximum needs to be done to try.

I am one of the vulnerable.  I am supposed to be one that will get the vaccine before the average healthy non-senior.  And in spite of everything I wrote, my decision is not an easy one.  But I know, that I have put an enormous amount of time and thought into it.

I am encouraged by the mRNA vaccines because these do not contain any form of the virus.  That is a big deal for me as I have written previously about my concerns with “live” or “deactivated” vaccines.  And I have strong reason to have faith in at least one of those vaccines, because I personally know someone, who was involved in the process of discovering the vaccine.  Their advice, “you need this vaccine.”

But, being a long term cancer survivor, I have been a guinea pig before.  My treatments were discovered, and could treat my cancer.  What was not studied were the late side effects that could develop if I lived long enough.  And for the last year and a half, I have been fighting for my life, literally, because science just did not know.

The same situation exists now, an extreme lack of data.  Speaking of only my situation, there is zero data on people with a compromised immune system.  There is zero data available for long term side effects of the vaccine.  And then there is one more concern which I will get into in a minute.  But first, two of my most trusted advocates.

I have more than a half dozen doctors that take care of all of my needs.  Two of those, my primary care (I have had for over 30 years), and the doctor who has been there for me since the discovery of my late term issues from day one (almost thirteen years ago).  These two doctors are the ones I trust completely, and that is not an easy thing for me to do.  And oddly, they are not on the same page for this issue, each for their own reason.  Which means my decision will fall squarely on me.

So, here is how I have come to the decision that I have.  There is a factor with my health, and my immunity that my doctors and I am aware of, my body does not make antibodies easily, in other words, unless my body is challenged with multiple boosters, I may not develop immunity, the vaccines would be a waste.

At one time, in the beginning of my cancer journey when my spleen was removed, I was given a pneumovax shot for pneumonia.  This was to be for life.  It ended up not being so.  Then they said it was good for ten years.  As part of my surveillance, my blood was checked for titers (antibody development), and after one shot, I had none.  In fact, it would take two more boosters that one year alone, and then a couple years later, three more boosters.  And I had this same issue when it came to the menningitis vaccine.

While I believe the vaccine is remarkably effective, actually efficacy rates that were unimaginable at one time, the data is only on healthy people, and only for three months.  There is no data for someone with my health history.  There is no protocol to check for antibodies after getting the vaccine.  There is no protocol for getting any needed booster of the vaccine, as historically my body has proven could be likely.

So, here is my situation.  I have friends saying, “but Paul, what do you have to lose, at least give it a shot (no pun intended)?”  And it is true, it could work.  I just do not know, there is no data or protocol to prove it.  But me getting the shot would do nothing for me, to change the way I have gone about life for the last year, the same way I have done with all the other times viruses have popped up.  Getting the shot would not allow me to hang out in crowded restaurants or movie theaters again.  The vaccine would give me potentially a false sense of security.

But worse for me, because I have no problem with the mitigation efforts, I have gone much longer with restrictions as a cancer patient, the vaccine would be a waste on me from someone who could benefit from it.  That is not to say I will never get it.  I am likely to.  As I said, I do believe in it.  But I want the data to support my situation.  And I want the vaccine to benefit someone definitely.  I have put  a lot of thought into this.  No politics.  No MSM.  Even amongst my two top medical advocates cannot agree, but are both factual in their arguments.  So, for me, it comes to a moral issue.

I will get the vaccine, but will wait for the data, I will wait for the protocols.

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