Paul's Heart

Life As A Dad, And A Survivor

Another Unexpected Goodbye


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A post came through on my Facebook feed last night.  I had to look at it twice, because at first, I could have sworn, that it was some sort of shared post, or perhaps even someone had hacked my friend’s account.

I have been in this position many times.  In twenty-five years of cancer survivorship, I have met over a thousand people, and I have also said goodbye to so many.  When it comes to long term survivors, for some reason, the pain and the loss is even more severe, and as far as I am concerned, cruel.  A person goes through enough in their life fighting cancer, to have to go through another challenge with their body, or as in the case of many long term survivors like me, many health challenges.

But there it was, a post, written by my friend’s husband.  I did not read the post right away because in spite of having witnessed this more than a hundred times, I still hoped for something different.  I skipped that post, and went to the prior post, where my friend had posted something miscellaneous, and the post before that, and before that.  Clearly, there was nothing to be concerned about.  And so I went back to the top post, already being populated with comments.  This was going to be yet another goodbye.

My friend’s husband posted that his wife of 35 years, had passed away due to complications from a medical procedure.

Sadly, this is the life of a long term survivor who battles late side effects from the treatments that were used decades ago.  I know, because I have a lot of those issues myself.  What is an otherwise “routine” test or procedure for some, is not so for us.  To a doctor who is untrained what to expect with a complicated health history such as ours, results can be tragic.

I was actually introduced to my friend, by her sister, who sought me out for support for her sister, who had been struggling with cardiac issues related to the same cancer I had, Hodgkin’s Lymphoma.  As I have often been over the years, I have not just offered support and counsel to patients, but also family members who struggle to understand the many effects and issues of cancer patients and survivors.

The unexpected and shocking loss that I feel at this moment, pales in comparison to what my friend’s family is going through at this moment.  Jackie, you and your family are in my thoughts and prayers as you mourn for your sister.

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…

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