Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Let Children Be Children


dsc07020.jpgPardon me while I make a rare Bible reference, but for this post, it is appropriate.  In first Corinthians, it states, “whey I was a child, I played as a child.  When I became a man, I put the ways of childhood behind me.”  Let’s face it, we only get one shot at childhood.  I cannot remember at what age, I actually had to keep pleading with my oldest daughter, “Maddy, please, stay a kid.  You don’t get to be one forever.  Let Mommy and Daddy worry about the grown up things.”  My oldest being as intuitive as she is, and as caring as she is, simply cannot help herself, she wants to help with grown up things.

My daughters unfortunately have had their share of “grown up” moments to deal with.  None of which were their choice.  Having seen their father hooked up to all kinds of machines following my heart surgery.  Watching their grandfather die from lung cancer.  And of course, witness their mother and father go through a difficult divorce process.  There are a lot more instances that their childhood has been put on hold, while their mother and I had serious issues to work with.  In any case, in many cases it could not be helped, in some, perhaps it could.

I have done everything I can, to make sure that my daughters have not had any part of the divorce process, other than dealing with the separation of their mother and I.

When the decision to file for the divorce was made by me, we had already been sleeping in separate locations of the house.  We barely spoke to each other, and when we did, there was obvious tension.  We typically went in our own directions, and we no longer turned to each other to solutions that were plaguing our home.

I am not sure what possessed my ex to insist on this, but she wanted the girls to be told everything that was going on.  She felt they needed to know.  I on the other hand, felt that at the ages of 8 and 10, they were too young.  It was bad enough hearing frequently from my daughters “why does mommy yell at you so much?” to which I usually responded, “it’s a grown up thing.”  And it always was.  I wanted to be careful, that no matter how miserable my ex and I were, we never made the children feel it was their fault.  And it never was or will be their fault.  Multiple attempts at counseling only brought out the issues, but never provided any way to resolve them.  Often times, we would leave feeling even more resentment than when we had arrived for the appointment.  But it was clearly our problem, not our children.

My ex loves to force issues.  And she was steadfast in telling the children everything.  I do not know if she had been hoping my mind would be changed once the children would be put in the crosshairs of the divorce because she knows my daughters mean everything to me.  I would and will never hurt my children.  Clearly she felt I would believe I was hurting my children by continuing forward with the filing of the divorce.  But later that evening, we did sit down with the girls and I told them that I had filed for divorce.

The word divorce clearly was familiar to them as they knew of the word, and knew several classmates who were from divorced families.  This actually seemed to help prepare them for the rest of the discussion which now I realized I could control how they would interpret the conversation.  My number one priority was to make sure that they knew and believed they were not the cause of the divorce.  My second priority was to make sure that they knew and believed no matter what, their mother was always going to be their mother, and I was always going to be their father.

That may seem like a simple and assumed statement, but it is something that I regularly tell the girls.  As my ex and I move on in our lives, there will be significant others in our lives, but at no point will I attempt to replace their mother with anyone else.  During our visits with each other, I constantly reinforce the importance of them being able to talk to both their mother and I.  We are always, and will always be their parents.  So far, we are demonstrating that we can co-parent our daughters separately.  I will not undermine her authority with a punishment.  I will support her decisions if they are in the best interests of the girls.

I will do my best to protect my daughters from all the negativity that swirls in the divorce process.  During my visits, the girls do not hear of the word “divorce”, and I make sure that our times are occupied as they once were, as Daddy and daughters.  I am lucky, those around me do not talk with me about my divorce, which I do not mind, but it also means that it is less likely for any of my friends to let a comment accidently slip if my children happen to be around.  Of course, I cannot control this when I am away from them and they are with their mother.  But I hope that they too are not discussing their personal feelings about me in front of them, not just in front of them, but even if they are within earshot.  My kids have hearing like bats.  The last thing that should happen is to put my daughters into a situation where their loyalty to either parent should be put into question.  They love their mother.  They love me.  And if they also have feelings for someone who is criticizing either my ex or I, it is that individual who will eventually lose out on the respect and love of my children.

I have hopes that some day the animosity will die down as things settle.  But it is important that until that happens, to let the children be children.  It is important not to ever let them think that they are the cause of the divorce or any of the fallout.  It is important that they know their mother will always be their mother, and their father will always be there father.  If that happens, they will be fine.

Forgetting Or Forgotten


Survivor 1

I spent the entire month of September, National Lymphoma Month, trying to bring awareness to lymphoma as well as other blood cancers.  My cancer, Hodgkin’s Lymphoma makes up just 1% of all cancer diagnosis.  So it only makes sense that not many people know just what lymphoma is.

But as time goes on, an even bigger awareness is needed.  Many cancers are now very treatable and curable.  Hodgkin’s has a very high cure rate, but it is not good enough, and it is not safe enough.  In any case, many survive Hodgkin’s Lymphoma, often just to have to deal with a secondary effect, if lucky, just one.  Over all, there are over 12 million cancer survivors and the number is expected to grow.

But just like people being unaware of Hodgkin’s, there is also an unawareness of cancer survivors.

Survivor 3

I was meeting with the Survivor Committee for our local Relay For Life.  And a disappointing number was revealed.  The number of survivors attending the RFL have dropped nearly 50% over the last few years.  Together, we tried to figure out why.  In a perfect world, less people might just be getting diagnosed with cancer.  Perhaps cancers now are crossing over into other illnesses such as cardiac or lupus or MS (or any others) and simply the events now conflict with each other.

As a long term cancer survivor, I offered this observation.  For the first few years of my survivorship, I had the constant reminder of being a cancer patient/survivor because I had follow up appointments to get to.  Cancer was still a part of my life and it meant something to me to participate in Relays because I was surrounded by others who had gone through cancer.  But once I hit the magic five-year mark, my oncologist forgot about me.  And so, that became an opportunity for me to forget about cancer.  That is, until my late effects hit me many years later.

Today, protocols are now in place not to let cancer survivors be forgotten.  The American Cancer Society views a cancer patient as a survivor from the moment a patient is diagnosed.

Survivor 2

So while that is a great concept, and the desire is there to get and keep survivors involved with the Relay, there is an even bigger population who has been forgotten.  And this could be for the very same reason I mentioned earlier with the added fact that those in our lives have also moved on without cancer presently in our lives.

When you have lost so many in your life, in my life 5 immediate family members to cancer not to mention the countless friends and acquaintances over the year I have met, survivorship is a big thing.  And not just because you beat cancer.  But many survivors have a bigger issue ahead of them.  We were not expected live so long after our cancer treatments.  BUT WE DO!!!  That is the good.  The bad is that we are living long enough to have outlived the research that had been done to determine late developing side effects, some very serious, if not fatal.

We need to get and keep survivors involved in things like the Relay For Life.  After tall, this is your moment, to remind you that you have not been forgotten.  This is your reminder that there is help available for the many things that are going on with your body that neither you or your doctors understand.

There are over 12 million of us, SURVIVORS.  It is time to become aware that we exist.  And we need help too.

Survivor 4

Awareness Works!


I have mentioned repeatedly how little knowledge people have of lymphoma.  In spite of famous celebrities being diagnosed with lymphoma, it rarely catches the attention or inspires any movement toward a cure.  Funding for research barely exists because of the belief that it is better to fight the bigger cancers believing that once that victory is one, finding cures for the little lesser known cancers will be sure to follow.

In other words, patients and survivors of blood cancers – lymphoma and leukemia – we are on our own.  But we have it in us to create a movement to find our cures.  Look at the success of the ALS Ice Bucket Challenge.  Susan G. Komen did not just happen over night.

I have told my story here over the last year and a half.  And once I started sharing stories of other patients and survivors, viewership picked up even more.  “Paul’s Heart” was being shared across multiple sites.  Even “Stephanie”, the subject of “Stephanie’s Words” posted last week was shocked when I told her that her story reached over 4500 people between my blog here, and the “Paul’s Heart” Facebook page.  This is not something to be taken lightly.  “Paul’s Heart” has momentum with stories like this.

And with more stories, as I approach 10,000 views on this blog alone, more people will become aware.

I had several goals when I started “Paul’s Heart”:

*  more awareness of lymphoma

*  inform survivors and comfort survivors that the late effects they are dealing with from their treatments are very real

*  improve protocol of treatment surveillance before, during, and after treatment

*  eventually write my story into a book and other projects

Here’s how you can help.   Do you have a story about a journey through cancer that you would like to share?  It can be from the patient, caregiver, or survivor point of view and any aspect of the journey itself.
If you are interested to tell your story like I do, or like the stories from Michael and Stephanie, please email me at pedelmanjr@yahoo.com .

And from my heart, I thank you for all of your support.

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