Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “June, 2020”

I Was Not There. I Know The Truth.


Grandparents.  I am old enough to be one, like many of my friends, but got started late with a family.  But I get to see that things do not change for what a grandparent means to a child, in the many photos that get shared.  I really envy my friends because I know how I felt about my grandmother, and my friends get to experience that feeling now.

I do not have that opportunity any more.  I have not actually had that opportunity now, for twenty-two years, today in fact.  A day that I can never forget.  And it is bothering me this morning.

Growing up with a divorced family, I spent the majority of the time with my mother, actually 99% of the time.  She worked second shift, so, she slept during the day hours while I was at school, and gone to work by the time I got home from school.  We lived with my grandmother and her sister.  So, my grandmother took care of me while in the evenings, and because Sunday was “big dinner” day, attention was focused around her as well.  Damn I miss those huge meals.

I often referred to my grandmother as my “moral compass,” because when it came to decisions, it is not the things that she said or recommended to me to do, just like a compass, her directions were quiet.  I would make my decisions based on “what would my grandmother think?” or “would she approve?”

My grandmother would also become the first person I knew to survive cancer.  In 1986, she underwent a mastectomy for breast cancer.  I know, because I was not there.

I had been in the process of moving two hours away, for a job opportunity, dropping out of college.  In my family lineage, this was a big deal in either case, the job or college.  I opted for the job.  Like many young adults starting out, I was broke, and needed some seed money to get started in my new direction.  And that is where my grandmother came in.

As with many events in my life, this was one that she was proud of me for undertaking, and wanted to help.  She gave me the $250 I needed to secure my first apartment on my own.  I was not even in that apartment one week, when a phone call came.  It was my mother.  “You know your grandmother had a mastectomy today?”

No.  I didn’t.

We did not talk about such things in my family.  I was devastated.  My grandmother had breast cancer.  She did not tell me.  And I was so selfish going to her to help me get my apartment while she was dealing with cancer.  I became mad at her for not telling me.  She had more important things to worry about than helping me.  I did not want her to die.  People died from cancer.

I got into my car and made the long drive to the hospital back home.  When I arrived in her room, my grandmother was sitting up, with an innocent grin, staring at me.  “What are you doing here?” she asked.  “Um, oh I don’t know.  Do you want to tell me what you are doing here?”

It was a frustrating conversation.  All I wanted was for her to be okay.  She could not even let the word “cancer” leave her lips in front of me.  “I’m fine.  It’s nothing.  On the plus side, now I can wear your old shirts.”  This was a reference to the fact that having a mastectomy, reduced her chest size that allowed her to be able to wear shirts that I had grown, in a sense, she could wear my hand-me-downs.  I told her I was frustrated that she was too concerned about me when she should have been taking care of her own needs.  But that is who she was.

The first cancer survivor I ever knew.  She lived past her ten year mark.  My grandmother was my role model for surviving my own cancer, in fact, I used her oncologist because I considered his track record, saving my grandmother, a vital statistic.

In 1998, my grandmother would once again be told she had cancer, this time, ovarian.  My mother, my great aunt, my sister, my uncle, and I were in the room when the doctor had informed us, “the surgery had gotten all of the cancer.”  This was great news.  But it was what he said next that set off all kinds of bells and whistles.  “I want her to go through a preventative regimen of twelve treatments of chemotherapy.

Having just gone through my cancer myself, I knew something was not right in the way that the doctor was explaining it.  None of my other family members had even been in an oncology office, and of course, with no one in my family telling each other things, no one was aware of my fears.  Something was wrong.

I pulled my mother into the hallway and told her, something was wrong.  “Mom, preventative is one or two rounds of chemo.  Twelve is a full course.  Something is wrong.  We are not being told the truth.”  I had one other uncle that I told my mother she needed to reach out to her brother and express my concerns.  But those concerns fell on deaf ears.

On Saturday, June 13th, 1998, I visited with my grandmother.  She was to start her chemo on Monday.  When I walked into her house, I was taken by surprise.  She had gotten her hair cut, real short.  I had never seen it this length.  Clearly she was preparing herself for the new look she would be sporting once the side effects of the chemo would cause her to lose her hair.

It was not just her hair that caught my attention.  It was her.  She seemed withdrawn, her focus clearly somewhere else.  As I walked through her house, I noticed that the informational booklets about her treatments were laying on the table, unopened.  I thought this was odd, because I really expected her to have at least looked at the book, to prepare.  She followed all kinds of instructions, even to things she did thousands of times, like cooking great Sunday dinners.

I asked her if she was okay.  And of course, she lied to me and said she was fine.  I told her that I had come that day, because I had a function to attend to on Sunday, but wanted to see her before she started her chemo on Monday.  She was barely paying any attention to our conversation.  I guess it was understandable.  I remembered what it was like for me, when I started my chemotherapy.

I am annoyed today about my grandmother’s passing.  I am usually just sad and in a state of reflection of my happier memories of my grandmother.  But not today.

My grandmother’s obituary is wrong.  And if it is not, then the calendar is wrong.  I know, because I was not there.

I was in charge of a very large youth group at my church.  And as I had told my grandmother that Saturday, I had a large event with the kids the next afternoon, not able to visit with her after church.

That Sunday morning, I had received a call from my sibling, that my grandmother was taken to the hospital.  She had developed fluid in her lungs.  I told my sibling I was on my way to the hospital, but instead she answered, “grandma said she knows you have things to do today.  She will be fine.  She understands.  She will call you tonight.”

Following church, I grabbed some lunch, and came back to the church.  We had approximately fifty kids participating, and had a great group of parents and fellow advisors chaperoning and helping.  The church phone was ringing, and I asked one of my advisors to answer the phone.  I looked over to her to see if she needed any assistance with the call.  Something was wrong, I could see it.  She was frozen in place.  The phone slowly came down from her ear.  I could see she was crying.

I rushed over to her and asked her what was wrong, if there was anything I could do for her.

“It’s your grand…”

I never heard the rest.

I walked into the church office, stunned.  My advisor had followed me into the office and told me, “you go on ahead, I can take care of things from here.”  And if from my grandmother’s own heart, I answered, “no, that’s okay.  Can you just give me a few minutes to gather my thoughts and I will be right out.”

People do not understand who I am and what I do and how I respond to things.  I get this from my grandmother.  Calm, cool, collected, focused, get the task done and move on.

The event was done about an hour later.  I sped on the country back roads to get to the hospital, though not sure what the rush was, because she was already deceased.  I was too late though anyway.  She had been moved to the morgue.

The date was Sunday, June 14th, Flag Day.  I will never forget it.  I will never forget where I was not, because I know where I was.

The newspaper has her date of death as June 15th, as it was printed in the obituary on June 16th.  And today, twenty-two years later, I noticed this error and I am annoyed.  I do not recognize Flag Day anymore, I used to.  But to me, this day means so much more.  I know, because I was not there.  She passed away on June 14th, a Sunday.  I know, because I was not there.

My grandmother died the day before she was to start her chemotherapy.  That in itself is another post, she was about to undergo chemotherapy, but she was that bad that she died from the cancer?  What the hell did the doctor say to her to convince her to go through chemo if she was going to die anyway?  Suddenly I had the answers as to her appearance and the signs around the house.  She was tortured with the prospects of going through chemo, something she avoided with her breast cancer surgery.  But she must have had a conversation with her doctor that none of us were aware of.

She knew she was going to die.  My aunt, who still lived with her, was not even aware that my grandmother had set aside clothing to be buried in.  AND SHE LIVED WITH HER!  My uncle was due to visit my grandmother in a couple of months, and I believe the doctor sold her a bill of goods that chemo might buy her the time she needed for him to visit her before she would die.  None of us know for sure, because she never said anything.  All I knew, was that I heard something wrong in the way the doctor had talked to us that day of her surgery.

I may not have the greatest memory, but there are events in my life that I remember vividly, and can never forget.  And this is one of those events.  I know, because I was not there.

We Are Not Alone


When I was diagnosed with Hodgkin’s Disease (it was called that back in 1988, not the less scary but more cancer sounding Lymphoma used today), there was no internet, at least for me.  I did not even own a computer, or a cell phone.  I am pretty sure I did not even have a cordless phone in my house.

I was on my own.  Sure, I had my wife.  I had my doctors.  I had my nurses.  I even had a therapist.  But I was on my own.  I saw other people in the waiting rooms, and I assumed they were there for cancer, though not sure what type of cancer, or even if by some chance, it could be the same type of cancer as me.

In 1996, I got my first computer, and learned about the internet, and the many things that it could do.  And of course, me being the investigative type, I started to research Hodgkin’s Disease, and soon found out, there were “groups” that talk about it.  To understand how primitive a concept this was to me, would be like saying the beginning of Facebook, came from the use of a chalkboard.  Don’t know what a chalkboard is? Look it up.

There were two groups that I found myself curious about.  They were called “list serves”.  You post a message, and then other group members respond to your message.  Not only were you able to learn about what you had been through, you could learn what others had been through as well.

This list serve still exists today.  I was invited to this list by another long term survivor, who is no longer with us.  And in spite of my denials that the list was not meant for me, because I did not have the health issues that those on that list had, I was and still am a member of that list.  In 2008, this list would mean the difference to me, with life versus death, as I discovered that I had issues related to my Hodgkin’s treatments eighteen years earlier.  I only knew about them because of the information shared by the people who belonged to this list.

Seeing their words was not good enough.  I wanted it to be more “real” and to do that would mean meeting them in person.

I would arrange several gatherings such as this one pictured, so that other Hodgkin’s patients and survivors could get together, to see, that we in fact, were not alone.  And they literally came from all over the world, England and South Africa.  I tried to do these annually, but I wanted it more often.  So, much to the frustrations of my ex wife, nearly every trip I made, I announced that I was making my trip on these lists, and if anyone would like to do a sort of mini-gathering while I was in their general area, I would make it happen.

These are just some of the several hundred other Hodgkin’s survivors I have met over the years.  But today, it has a whole new meaning.  And every long term survivor of Hodgkin’s Lymphoma will agree.

The late side effects from our treatments have haunted many of us for years, with no reasons or answers for the many issues we have to deal with.  Doctors were never trained about our issues.  Medicine had not researched our issues of survival, because technically, no one gave a shit about us after we passed our five year mark.  We were on our own.  And without knowing about these list serves, being alone is devastating.

But because of those lists, I found the help that no one else was able to give me.  With the help of that same fellow survivor who encouraged me to participate with ACOR, I found the doctor that would not only save my life, but help me live it.  Hodgkin’s survival was his specialty, for decades in fact.  Together, we have a deal.  He will do his best to make sure that I see my grandchildren, something I hope is a long way away.

Fast forward to the turn of the century, and introduce Facebook.  All kinds of groups had formed when it came to Hodgkin’s and late effects, even some “issue specific.”  What it meant was, more people to meet.  What it meant was, more people like me.  What it meant was, I was not alone.

There are those in my survivorship that have had personal impact on me and the directions that I have taken.  While I have personally met hundreds, if not a thousand by now, I have spoken with thousands more.  But another influencial survivor would come along and be a moral compass for many of us.

I spoke with Dolly, a fellow survivor many times, but never had the pleasure of meeting her in person.  She was a kindred and free spirit.  But she was also quick to “knock some heads together” the minute two survivors might not play nice in the sandbox.  She was literally all about peace, love, and happiness.

Prior to her passing, she made it known, that she would like to see someone, some organization, step up, and provide the help that our fellow Hodgkin’s survivors needed, information, resources, support.  And just before her passing, the concept was born.

I won’t go into the nuts and bolts of Hodgkin’s International, because it deserves a post on its own and what it has been doing.  The fact is, Dolly’s dream has come true.  And the reason I mention this, is an example that occurred this morning.

I cannot produce any photos, because I do not have rights to do it, but this morning, a web meeting was arranged through HI, with 100 fellow long term survivors of Hodgkin’s Lymphoma.  Lengths of survivorship ranged from twenty years to FORTY-NINE years!  We got to introduce ourselves to each other.  Put faces to names.  And most importantly, see and know, we are not lone.

Thank you everyone who has made this day possible.

 

When You Want To Help


Many years ago, I worked for a major corporation.  Inside this location, several “community outreach” activities took place several times a year.  One of those, was a blood drive.  Having several thousand employees, it was a major donation drive, made even more popular because donors were often given “gifts” for giving the gift of their blood.  I would see some of my co-workers come back with some major swag from windbreaker jackets to coolers, all kinds of things.

But that was all I got to do as far as blood drives went, look.  As a cancer survivor, I am ineligible to donate blood because of the my blood being compromised from my radiation and chemotherapy treatments, even though they were over thirty years ago.  I understood the rules for donating blood and why they were in place, but when I asked if there was any way that I could help, to make a difference, that I might be able to get some of that fine merchandise, I was told “no.”

As an advocate, I was kind of taken back by the short response.  I know, you have blood donors, you have the phlebotomists, and of course the other staff of blood banks.  But do you mean to tell me, you have no need for any other help with such a critical effort?

If you follow this blog, you know my role as an advocate.  You also know that I can be determined when I hit a stumbling block when I try to help one way and I cannot.  I find another.

With my health issues, my days of participating in actual protests are long over, though if it were not for Covid19, I would likely find it hard to not want to stand by, supporting efforts against police brutality and racism.  But unlike my efforts, there are ways that I can still make a difference in these intense times for racial equality.

Back in 2009, as my older daughter was about to begin elementary education, there was turmoil in our school district.  The school board at that time, filled with bullies, had taken their negotiations public, humiliating the teachers union.  Again, if you know me, I do not tolerate bullies, and there were nine of them sitting on that board.  I attended only one school board meeting to protest the way the school board representatives were conducting themselves, and faced accusations of being disingenuous and unscrupulous.  Such big words to be used against one solitary citizen making comments during the public commentary of the meeting.

And with that, I made a decision to campaign for school board.  I never even ran for any position in student government.  But I soon found out, that unlike my fear of the anonymity I had in school would prevent my likely election, my skills as an advocate, and accompanied by four other strong candidates, soon found ourselves in a position to finally break a stronghold in our school district for decades.

I had no experience.  But I had a desire to make a difference.  I am all about treating people with respect.  Regardless of my feelings for or against the teachers at the original time, I did not like the way they were being treated, especially publicly.  And soon, not only did I receive recognition from my well educated and experienced running mates for my ideas, our adversaries soon found out, not only how resourceful we were, able to discover “behind closed door” activities, but with our lack of being politicians, we did not make decisions as politicians and they did not know how to prepare for us, or deal with us.

We lost that first attempt, barely.  Four of us lost by less than 300 votes, two less than 200 votes, and one actually lost by a few dozen.  The end of the night, of course none of us were sitting on the school board, but we did “win” the battle.  We made a difference because we got recognized.  A simple concept, people not getting out to vote, even just 300 more in a district of 60,000 voters, was all it would have taken.

So, we kept trying.  Two of our slate got elected that next election, and a third finally not only got elected the following election, but was voted as school board president.  Today, the entire board from 2009 has been replaced.

My last thirty years, and as many as I have left, I have always been, and always will be an advocate for as many causes as I can:  cancer, adoption, long term cancer survivorship, discrimination, parental rights and the list goes on.  I do what I can, when I can, as my energy allows.  I have my physical limits but I find ways to help in other ways.

Looking back, perhaps my motivation may have been wrong with the blood bank.  Because I have been able to make more of a difference when appreciation, gratitude, and success are enough of a motivation.

My daughters have witnessed my many forms of advocacy.  And they both have great hearts filled with compassion and empathy.  In recent years, I have seen their actions to help others whether in school or in public.

A couple of weeks ago, on Tuesday, my older daughter made a post of a black “jpeg,” in support of “Black Out Tuesday,” in memory and support of the murder of George Floyd at the hands of the Minneapolis police.  She knew what she was doing.  And what made it even better, she did it on her own.

Over the last sixteen years, I have done my best as their father, to set examples for them in regard to advocacy, money, relationships, education, and so on.  It is when I see something that has been done, unprompted by me, that I can see the impact that I have indeed had on my daughters.  And I am proud, as always.

Post Navigation