Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

A Lesson For Oncologists From Jessica


As a 25 year survivor of cancer, I have grown accustomed to the fact, that the majority of medicine still has no idea how to treat those of us who are dealing with late developing side effects from treatments for cancer.  After all, the benchmark is “five years”, so medicine and science, never really studied what could happen to the average cancer patient if they lived longer than those five years.  Well, there are over 12 million of us, and if we are lucky, maybe 1% of us get the care we need, from exceptional cancer facilities who finally saw the need to take care of those of us, who have lived long enough to develop issues that no one had any idea that could happen.

The studying of long term cancer side effects is relatively new, but what is not new, is that follow up care is more closely followed for newer survivors, and for the rest of their lives.  But as one new cancer survivor points out, there is still one major area that many oncologists are still failing cancer patients.

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I would like to introduce you to Jessica, a 25 year old mother of two.  She has a fiancé who together own their own ice cream parlor in mid-Pennsylvania.  A little over a year into the ownership, Jessica was diagnosed with Hodgkin’s Lymphoma and treated with chemotherapy and radiation.  She finished her treatments a couple of months ago, and this past week, she received great news that all cancer patients want to hear, her first post treatment scan was clear.  Her Hodgkin’s was gone.  While that news was great, something was troubling Jessica, and she wrote an “open letter” to her oncologist.  But to be honest, this letter could very well speak for nearly all cancer patients.

Jessica has given me permission to post her story on “Paul’s Heart” in hopes that more people are inspired to bring such an important discussion to oncologists.  It is not good enough to treat us.  You have to prepare us for the life that is ahead as a cancer survivor.

The link to Jessica’s blog is :  http://jesskmcd.tumblr.com/post/127243498326/an-open-letter-to-my-oncologistthat-he-will

Here is Jessica’s letter:

“An Open Letter To My Oncologist…That He Will Never See”

Dear Oncologist,
Thank you for saving my life. Seriously I mean it. 👌🏻 but I do need you too know…in many ways I feel like you have failed me.
1. Remember those pain meds your perscribed…100 at a time…for months…the ones that make you feel all warm and fuzzy and happy even though your dying? I don’t get those anymore. Now I am left to deal with my real thoughts and feelings without that warm & fuzzy filter. You never should have just handed those out…no warnings or anything. Thankfully as a mother I knew better than to get to far in. Don’t worry I didn’t get addicted, thanks for asking.
2. You never told me about PTSD. You never told me how irrationally angry I would get at the world. You never warned me that the post treatment fight with yourself can be scarier than the one against cancer. You should have told me, because I have learned through others like me that this is common. If you didn’t know this was a “side effect” of cancer treatment than you should quit your job, because every single cancer patient goes through this in one way or another.
3. Speaking of post treatment treatment, thank you for suddenly making me wait weeks for test results, not returning phone calls, and general lack of compassion. I may not be DYING anymore, but I don’t know that. I don’t trust that. I still feel like I am dying. Every day I see friends I have come to know and love who also battled along side me who relapse. Every hiccup, every little pain, I assume my cancer is back. Again…PTSD. I understand you have a lot of patients to take care of…who are dying. But I am still a patient. I have more than just physical needs. Maybe your department should hire a nurse or doctor for “post treatment care”. I understand that’s probably not in your budget. I just feel as though I have relied on you and your nurses for months, trusting you to keep me alive and then the second treatment ends…it all ends. No one cares anymore. It’s a hard realization to deal with. We go from everyone praying for us, getting special treatment & attention to “the girl that had cancer”. I understand the end of the pity parties, but as my oncologist I still NEED you to have some compassion for me.
4. Two mins of your time isn’t enough. I don’t like having to feel like I am holding you up when you try to shake my hand and leave, and I jump up and say wait! I have questions! I feel like an inconvenience. It’s not a nice feeling. I have learned through treatment your not warm and fuzzy. Luckily your nurses are because I needed that. But I think with a 24 yr old mother who has cancer, you need to be slightly more understanding. Then again I don’t even know if you know I have children.

Thanks for being awesome.

-That one cancer survivor

Irony – What Is Best For The Children?


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No one ever gets married with the belief that one day, their marriage is going to end in divorce. Even in spite of the creation of the “pre-nup”, the legal arrangement pertaining to each spouse’s belongings, which basically starts a marriage off in the condition of “in doubt,” the marriage still commences.

But sadly, things happen. In fact, it is not just one event that is the cause of a divorce, as much as it might just be a “straw that breaks the camel’s back.” Much like trying to find a root cause of an accident or injury (you fell, scraped your knee), you need to investigate what actually led to that accident or injury. Marriage leading to divorce is no different.

It is hard for someone to understand, and easy to judge, who has never been married. And even if someone has been married before, and never divorced, only the two spouses involved in the failed marriage can have any hope of finding the root cause of their divorce. But I assure you, it is not just one particular event.

But when there are more than just husband and wife involved, children, even more factors play into the difficult decision of filing for divorce, ending the marriage, but being careful not to end the parental relationships. Mother will always be mother. Father will always be father.

Dr. Phil often quotes, “it is better to be from a broken home, than to live in one.” And perhaps he is correct. What if it actually better that a marriage ends? Is there anything healthy about a child watching their parents argue continuously? Is there anything healthy about watching one parent berate another? Is there anything healthy about two adults, living in a house with each other, just co-existing, showing no signs of affection or love? Aren’t the parents the role models for their children to show what should be expected in a relationship?

But if we are going to end a marriage, and as mother and father, we are still to be our children’s role models, then we must demonstrate what it takes to continue to be the only mother and the only father the children will ever know.

When a divorce involves children, even discovering the root cause of the divorce really does not matter. Obsessing about the cause of the divorce, or perhaps a final event in the marriage, only keeps the direction of the divorce from moving forward and will most likely result in even more animosity and hostility. But what does this benefit the children? It does not.

Here is the fact. I will be the father of my children forever. Their mother will be their mother for the rest of their lives. From a legal perspective, my estranged wife and I will remain in a legal position of authority until each child turns 18. But from a family perspective, while we may not be husband and wife any longer, we will have family connection until the very end. Whatever our daughters chose to do with their futures, get married, go to college, have children, my estranged wife and I will always be involved as mother and father. No legal dissolution of our marriage will ever take away from each other, our responsibilities to our daughters.

Our daughters are fairly resilient. They are known for adapting to change quite easily because neither of us taught our daughters to be afraid of change. Whether it was changing daycares, moving to new grades in school, or attending a party of a new friend, our daughters have always just rolled with whatever came their way.

And as long as their mother and I continue to let our daughters be who they are, and how they respond, our daughters will adjust fine with the divorce knowing that they are loved by both of us. But if at any time, they are made to feel that they must choose, prove loyalty, or be blatantly placed between either of us, then all bets are off. Each of us can only promise to do what is best for our daughters, and then actually follow through on that promise.

As a child of divorce, no none understands what my children are going through, more than I do. I know what it is like to have one parent here, one parent there. I know what it feels like to be worried about having fun with one parent, while another parent might not be having fun. I know what it feels like to be worried that one parent might be feeling lonely or betrayed because I willingly choose to be with one or the other parent. I know what it feels like to think I might be the cause of my parents’ divorce. And let me state clearly, just as I have reminded our daughters, they had absolutely nothing to do with the ending of our marriage.

Both of us will always be the parents of our daughters. That will never change.

The true irony is that we are expected to get along as a divorce couple. The true irony is that we are expected to cooperate through the divorce process. And there is the irony, if we can manage both of these skills, would we still be facing divorce? But at this point, it is no longer an issue of us as husband and wife. Even while we wait for a piece of paper that says “Final Divorce Decree,” we are no longer husband and wife.

But we are still mother and father. And our goals, just as when we were husband and wife, the best interests of our children, should not have changed. We should still want the best for our children. And that does not mean denying things or each other from our children. Our children deserve to have both parents in their lives. Our children deserve not to hear mean and explicit conversations about the other parent. Our children deserve to be encouraged to approve and accept someone else in each of our lives if those moments should arise. The bottom line is, what is the best interest of the children? It is simple. The best interest of the child is to allow the child to have unrestricted time with each parent as the child desires. It is in the best interest of the child, for the child to know that either parent can be counted on, at any given moment. It is in the best interest of the child, to be left to being a child, happy, and innocent.

My estranged wife and I both possessed different skills as parents. I often referred to it as our daughters having the best of both worlds. And as divorced husband and wife, nothing should change for our daughters having the best of both worlds. We each have different parenting styles, and our daughters reacted to each, and decided at each moment, what and when they needed.

The bottom line is this, we are both going to be counted on by our daughters. And it is important that we never forget what is important to them and in their best interests. The children have this right, and it is a legal right to be with either or both parents. And to keep a child from one parent for any reason is not only illegal, but immoral.

As time goes on, things can change. The first year of divorce and custody, just as the first year of college, a job, a marriage, is all about a learning curve. And perhaps adjustments need to be made. They definitely need to be made when it is in the best interest of the children. Perhaps the children want to spend more time with the non-custodial parent. Perhaps as teenagers, they want to spend less time with either parent. Ideally, it should not take a court order to “tweak” arrangements, but in a situation where one parent will dig their heels in defiance, would rather have a judge make an order than to be perceived as having given in and weak. But really, think about it, what a novel concept that would be, for two parents to agree, “hey, it is no big deal that you want to stop by and say ‘hi’ to our daughters” or perhaps, it might be possible to grant an extra visit without having to go through a court order. But then again, there is the irony. If parents could get along and make that decision without a court order…

When You Don’t Get Another Chance


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I learned about this expression a long time ago.  It was a very painful lesson, one that my father took with him to his grave.

Though I do not recall the year that it happened, I do remember that the event happened just days before Christmas, many years ago.  My father and my stepmother were having a discussion about insurance issues, that progressed into an argument.  They still had some last minute Christmas shopping to do.  They left their house just moments apart, my father first.  He got into his car, started the engine, then looked across the street to where my stepmother was now beginning to cross during the dusk hour of the evening.  And then it happened.  My stepmother never saw the car that hit her, and the injuries were critical and extreme.

On the plus side she would eventually recover enough to be released from the rehab facility, but clearly nowhere near a 100% recovery, if even 50%.  She also would have no memory of the accident itself.  And no memory of the accident, also meant that she had no idea of the discussion that the two of them were having that evening, before the accident.

For my father, that meant he would never have any opportunity to apologize for the conversation that evening, and bore 100% responsibility for the accident itself, feeling that if he had not left the house in such an angered rush, he would have been walking across the street with her, and being able to prevent her from being in the path of the oncoming car.  Yes, my father took that evening with him to his grave.

The fact of the matter is, there is always going to be that chance that we never get the opportunity to make things right, once it is taken away from us.

Anyone who has followed “Paul’s Heart”, knows that my daughters mean the world to me.  They are everything.  Every night (prior to my divorce filing), I held them.  I gave them a goodnight kiss.  And I told them that I loved them.

On April 16, 2008, I had a conversation with my daughters that I was going to be going away overnight.  Being they were only five and three years of age, I could only give them minimal information.  I told them that I was going to be going to the doctor, and it was going to get real late, so I would be staying overnight.  I gave them their kiss, and told them I loved them.  This would be the first time that we would be apart, ever.

As it was planned, I was going to have a minimally invasive cardiac procedure, and I expected no differently than to return home later the next day.  Unfortunately, that is not what happened.

I was informed by the doctors that the damage was not only unexpected, but not caused by common ailments.  The main artery going to my heart had become so scarred from radiation damage eighteen years earlier, I had a condition referred to unprofessionally as, a “widow maker.”  I was going to need emergency heart bypass surgery in less than 24 hours.  I would not be going home.  I would not get to see my daughters again until at the very least, unless the surgery would be successful.

The next several hours went by so quickly between the anesthesia wearing off from the procedure done earlier, followed by all the pre-surgery testing I had to go through, because doctors were dealing with a situation, that they did not have a lot of experience dealing with, a long term cancer survivor.

When the night finally slowed down, and I waited for the orderly to come for me, to take me to surgery, 6:00 arrived, and I arranged with my daughter’s mother to speak to them on the phone.  I could not hold them.  I could not see them.  They could not see that I was scared that I might not see them again.  All I could do is tell them that I loved them.  If everything went well, it would be at least another two days before I was even able to talk to them on the phone.

This is a time period that to this day causes me such sadness.

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A week later, I was sent home, with my two very happy and caring little girls.  They knew that I had a very bad “boo boo” on my chest, and they took very good care of me.  Today, they understand that my health is not like everyone else.  And that is why I am doing all that I can to deal with the divorce issues with their mother so that the four of us can go on in the direction that we have chosen.  I do not want to ever have the situation again, that I did not get that one last chance with my daughters.

I have had two very extreme lessons in my life, about second chances, actually a lot more, but only used two for this post.  But you get the idea.  It is okay to have an argument.  But it is better to resolve it when you have the chance.  A lifetime of guilt is a horrible cross to bear.

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