Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Finding Something Good Out Of Something So Tragic, Offers Small Consolation


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I first wrote about Michael Scheidemann’s story back in September (see “Meet Michael” in the post archives or “Michael” in the pages section).  It is a tragedy that I will always believe could have been prevented.  I am usually objective and professional about my comments.  But with my experience as a long term cancer survivor, and the knowledge of side effects from treatments, and the technology available to monitor and detect issues related to those side effects, yes, I believe without a shadow of a doubt that his death, could have been prevented.

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The picture above is when I met Michael about a month after he finished his treatment for the same cancer that I had, Hodgkin’s Lymphoma.  Michael and I shared a lot of similarities.  Our birthdays were just a day apart.  I was the same age as Michael when he was diagnosed.  And then, what should have been for the better, and one would assume due to the advances of medicine in the decades since I had been treated, Michael was treated  with a standard treatment that exposed Michael to half of the chemotherapy drugs that I was given, and did not have to go through any radiation therapy.  He sailed through his treatments without one complaint, and with only one visible side effect, lost his hair.

From this picture on, things were supposed to be in one direction, survival, living his life in remission of one of the more curable forms of cancer.  That is not what happened.

Soon after this picture was taken, it was discovered that one of the drugs that both Michael and I were given, had caused irreparable damage to his heart.  At the time, all the family could do is move forward, fix what had been failing, not look back at what had been done.  Extraordinary measures were made to save his life.  But on January 6, 2014, his body could not handle any more trauma and he passed away at the young age of 24.

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For the purposes of this post, I will discuss my comments about what went wrong on another post.  Because as I promised the Scheidemann family, I believe, and have confirmed that a simple test could have been performed, and should have been performed since a drug with known possible cardiac side effects, could have determined the damage that had begun as soon as the first or second dose of the drug.  With the discovery of any damage, and clearly there was, a different treatment regimen could have, and should have been used.  And if I can do anything for this family, I will help them prove this so that Michael’s death will not be in vain.

It is an unwritten expectation in life, that it is only children, who are supposed to bury their parents, not the other way around.  I have never experienced the loss of a child, nor do I ever hope to.  And I am certain that the loss of a parent pales in comparison.  As a parent, we feel we must protect our children and do everything we can, and that in death of a child, somehow a parent feels as if more could have been done.  Regardless of how many times I have spoken with Michael’s mother and father, they will always carry this burden, in spite of me reminding them of all the things they did do for him.  But you see, there is no “prior experience” with having cancer.  Once you are thrown into the fight, you must be focused to get done what needs to be done, not think about all the other scenarios.  Everything that happens during this battle, is nothing more than cause and reaction.  We do what we have to, and hope that is good enough.  It has to.

Following Michael’s passing, his family did something extraordinary in Michael’s memory.  Michael was a student at Florida Gulf Coast University, needing just six courses to graduate with a degree in political science.  He had actually registered for classes that he had delayed to undergo his chemo treatment, and was ready to begin again, before everything went horribly wrong.  The family put two plans of action into play in Michael’s memory, one for Michael, and the other “from Michael.”

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Earlier this year, FGCU had notified the Scheidemann family that Michael would be given his degree posthumously.  His older sister Alyssa, also and FGCU alumni, accepted his degree, in his memory.

In the meantime, the family was hard at work, establishing a memorial scholarship fund, in Michael’s memory.  The scholarship was set up to assist students who faced similar challenges as Michael.  Through determination of the family, and the dedication of those who knew of Michael and his family, the Michael E. Scheidemann Inspirational Scholarship Endowed Fund was established, which will now award money to a deserving student at FGCU, to assist with college expenses.

A very special luncheon was held yesterday, to gather recipients of the school’s scholarships, and the sponsors who made the scholarships possible.  Yesterday, the Scheidemanns got to meet the young student, who is the benefactor of the first Michael E. Scheidemann Inspirational Scholarship Endowed Fund.

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Make no mistake, while the rest of us are truly touched by this gift presented, it by no means takes away the pain that this family feels every day, without their son and brother, Michael.  But they are extremely happy, that they have been able to help a young man, afford his education.  Michael would have wanted it this way.

If you would like to make a contribution to this scholarship, especially with those interested in making donations before the end of the year, please consider the Michael E. Scheidemann Inspirational Scholarship Endowed Fund.  Here is the information:

send to the attention of:
Christopher Simoneau

VP Advancement & Executive Director
Florida Gulf Coast University Foundation

10501 FGCU Boulevard South
Fort Myers, FL    33965

Write Michael E. Scheidemann Inspirational Scholarship Endowed Fund in the Memo Section of your check.

 

The Effects Of Divorce On Children


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I would NEVER, EVER, do anything to harm my daughters.

I realize that judgment will always reign over understanding when it comes to dealing with a decision on filing for divorce.  Especially when children are involved.  And although the ages of any child of a divorcing family may vary in their response, the hurt the child experiences is the same.

One of the first things I was taught in church was the 10 Commandments, one of which, “love mother and father.”  And the great thing that is supposed to happen, regardless of a commandment, is receiving a child’s never-ending love, whether it is a single parent situation, two parent situation, or multiple parents.

But there are two instances of comments that upset me, one which shows ignorance, and the other, selfishness.

The first comment, “haven’t they been through enough already?”  This question is usually directed at the fact that my daughters are adopted.  Regardless of domestic or international adoption, adopted children definitely have had to experience the loss of their parents, or perhaps the break up of their family.  That is true.  And only time will tell in their future, if their mother and I provide them with enough as they grow older, to understand their lives.  Of course, add in all the other drama that has existed in our household with all the Emergency Room visits I have had, and the children have witnessed, our daughters have been through a lot.  But one thing is certain, in spite of the divorce situation, I love them.  Their mother loves them.  And both daughters love us unconditionally.  Therefore, it is going to be how my estranged wife and I deal with the divorce, and the expectations, that will determine if that love continues to be unconditional or not.

The second comment, “you should have tried harder.”  We kept the problems of our marriage inside our home.  And inside our home, were only the four of us.  But as the problems grew, so did the tension, the alienation, unfavorable reactions, and eventually resentment.  The environment that was developing would have been awful enough for a childless marriage to endure, but to have two small children witness the daily struggles and tension between their parents, was unfair enough to subject them to.  But to stay together with a spouse, just because a friend just “can’t imagine” us getting divorced made no sense, and definitely was not in the best interest of the children.

We tried counseling on at least two occasions, fairly long term.  But the counseling was not enough just dealing with healing us as a couple, but unable to deal with personal baggage and compounding issues as well.  We would confide in family and a couple of mutual friends, but no one would seem to have a solution.  But the tension became more of an issue when I was confronted one evening by my oldest daughter, following a berating by their mother, “Daddy, why does Mommy yell at you so much?,” that then I realized just how bad the environment was affecting our daughters.

Please understand, we had more than relationship issues.  Those were only an effect of the root cause, and number one reason why couples get divorced, money.  But the last year of our “marriage”, and hard for me to believe, was the most difficult struggle we faced to endure, and over the prior seven years, we had been through a lot.  There just did not seem any chance to get ourselves to do what was necessary to correct our issues.

That environment was hard enough on our children to be exposed to.  And we did our best to protect them from the issues we faced.  But we both knew it was not enough.

Over the next ten months following my filing for divorce, we both followed our attorneys’ advice, to remain inside the home, so that neither of us could accuse the other parent of abandoning their children.  Seems like a silly thing for either of us to accuse each other as we clearly love our daughters, just not each other any more.  Yet the seed of distrust had been planted, and so, just as in the movie “War Of The Roses,” we remained living in the house with each other.  I made recommendations to my estranged wife as to alternatives, that would not increase our expenses, and in spite of giving my word not to pursue abandonment, we both dug our heals in, and were going to stay in the house together, until the divorce was resolved.

Now for those who say, “we should have tried harder,” that time period would have been great to attempt that.  But instead, what happened only made things worse.  Interference by those outside the home were making it impossible for any reconciliation by the constant harassment and threats, all under the guise of “free speech.”  But clearly the intent was to make sure we did not save our marriage.  Inside the house, that behavior only made things more difficult.  Alienation is one thing, but isolation is another.  For nearly ten months, I slept in a spare room, actually, I stayed there, when I was not at work, or out and about on business.  I showered at work, and I rarely ate in the home.  I allowed their mother to roam freely around the house without any interference or confrontation, while I remained confined in this room.  This is what the children saw day after day.  There was no improvement in the relationship between she and I.  It only got worse.

You tell me, how much harder should we have tried?  How much more should the children have endured?

Today, we are both dating.  I cannot speak for my estranged wife, but I know that I have no intention of ever getting married again.  But the important thing, is that our children like both individuals we are now involved with.  And this is very important.  Because they are witnessing their parents being happy again.  This is something that they have not seen in a long time.  Sure, we are not happy with each other, but around our children, we are happy again.

There is an expression, “husbands and wives get divorced, not children from parents.”  And I have always emphasized that no matter what happens between a husband and a wife, they will forever have the responsibility of co-parenting their children, forever.  And for many, it is easier said than done.  And I have seen some of the biggest parental rivalries co-exist in some of the most dire circumstances that give me hope that some day, some how, common sense and  reason will allow and nurture the co-parenting roles.

There are still some very difficult days ahead as the divorce process continues.  And each day, our daughters grow older, and more aware of what is happening.  But since the day that we have been officially separated, we have both been in control of ourselves for what our daughters see and hear about the divorce itself.  From my end, I have shown the girls that they still have both their Mother and Father.  I have shown them that they have a home with their Mother, and a home with me.  I have done what I can to build the same foundation with them, as when I adopted them.  They will never hear me speak ill of their Mother, no matter what comes from the other side at me.

Every day is a struggle to move forward, but I can no longer waste energy on whether the situation is “fair” or “tried harder.”  Both of us, as parents are trying to move forward.  For myself, that means continuing to find a way to support my children as soon as that opportunity arises.  I have promised my daughters, that I will make things better for them.  I know what it takes to get through a difficult situation having survived cancer, a near fatal heart episode, and two other near fatalities.  One thing is for certain, I do not give up.  I do not know how.

I love my daughters, and they love me, and no one, NO ONE can ever take that away from me.

Caregivers Come In All Forms


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When we think of the word “caregiver”, there is a tendency to associate it with the staff of a nursing home, or perhaps doctors and nurses.  But there are many more examples of caregivers.  Each caregiver has their own specific role.  In fact, it is possible that you may not even recognize some of the caregivers that exist.  As long as you are involved in the direct care of a sick patient, you are a caregiver.  Even pets can be caregivers.

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This was “Goldie”, a Goldendoodle.  She was also a “therapy dog” who was visiting my father during his first chemotherapy treatment for lung cancer.  I had my first experience with a therapy dog during an episode of aspiration pneumonia and had been hospitalized for several days.  When faced with a serious illness, it is very important to take care of yourself emotionally during your health crisis.

I had my first experience with pet therapy, when I went through my cancer treatment for Hodgkin’s Lymphoma.  I was living in an apartment, which unfortunately did not allow dogs, but for a $25 fee, would allow a cat.  And so I wasted no time in adopting a kitten, who because of her colors, I called her “Pebbles.”  Pebbles would always greet me when I rushed home from my chemo appointments, with the same procedure every day.  Barge in through the front door, rush right past Pebbles, straight for the bathroom, collapse on the floor and begin to vomit.  Cats being curious, Pebbles placed herself in her seated pose, right at the doorway, just staring at me, kneeling beside the toilet, occasionally lifting my head from the bowl to see her staring at me.  About a half hour later, I would drag myself from the bathroom to my bedroom across the hall, crawl into my bed.  Pebbles would follow me, jump up onto the bed, and lay down next to me on my ex-wife’s pillow (first ex-wife).  She would stay there, as if protecting me, comforting me, until my ex-wife would come home.

Years later, when I would adopt my Golden Retriever “Pollo,” I would have the same hopes of having Pollo certified as a “therapy dog.”

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I would not trade the fourteen years I had with my fur friend.  For those fourteen years, he was healthy.  There was only one drawback, he was happy staying a puppy his entire life.  As far as providing therapy, it was going to be his demeanor and joy with each visitor that was going to have to be enough therapy for anyone, sick or healthy.

But later in my cancer survival, he would provide that pet therapy to me when faced with my heart surgery, and other emergency situations that required recovery, he was there for me every step of the way.  Gentle at the right moments, and letting me know when it was time to get back on my feet and get back to being his friend again.

Needless to say, it is an amazing feeling to see those wagging tails in your darkest hours.  These caregivers rarely get recognized.

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The next obvious caregivers are the doctors, nurses, technicians, and therapists.  I will do a post on their importance of caregiving later on, though their value goes without saying.

But the next caregivers that I want to talk about, are the ones who simply get thrown into that role.  Years ago, when I completed my treatments, I made the decision that I wanted to “give back” in some way, for all the support I got going through my cancer journey.  I got certified as a peer to peer counselor with the American Cancer Society in a program called “Cansurmount.”  This program matched counselors to patients, cancer to cancer.  Unfortunately, it was a program that struggled to survive itself, falling short of volunteers, and I would end up counseling patients with many other cancers.

But you do not have to be “certified” to be a caregiver.  Simply being there with a ride to transport for treatment, accompanying to a doctor visit, or just sitting and keeping the patient company classifies you as a caregiver.  Anything that makes the patient feel better, giving them comfort, shows that you care.  You are giving care.  And you make a difference.  You do not have to be an immediate family member.  You can be a parent, a sibling, a cousin, spouse, friend, a neighbor, or even just a stranger.

Depending on the need, the caregiver level has the potential to get quite involved.  And it is here, that the caregiver themselves need to make sure that they are taking care of themselves.  It is very easy to get overwhelmed with their own emotions and physical being depending on the level of commitment.

Hospice workers are one example of the importance of caregiving.  In a patient’s end of days, hospice plays a major role in making sure that not only is the patient comfortable, but also, the family is having their emotional needs met.  I had my first personal experience with hospice as my father passed away from lung cancer earlier this year.  Months later after his passing, they still call me to see how I am doing.  I tell them that I miss my dad very much, but I am doing okay.  I have had over twenty years as a counselor, and feel that I have a fairly good grip on my emotional needs.

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My most challenging role as a caregiver, was as his health proxy.  For this, I would go beyond just driving him to his appointments, sitting with him and explaining to him everything the doctors were telling him to make sure he understood all of his options and decisions.  My dad looked up to me for support, to help him get through his battle with cancer.  His one wish, “to be a survivor like my son.”

I could not do that for my dad.  I was powerless to stop and cure the cancer that would take his life.  But what I could do for him, as the cancer spread, was make sure that his wishes were followed to the letter.  It was difficult for me to make a decision, that selfishly I might not have agreed with, but was what my dad wanted.  And as the cancer cells spread to his brain, and took away his decision-making ability, my decisions made were even more critical.  I had to make sure my dad was comfortable, all the while making sure that his wishes of no extraordinary measures to keep him alive, suffering.  My dad trusted me that I would be able to separate my emotions from the task that he asked of me.

Caregivers come in all forms, and carry out all kinds of functions.  But without them, professional or familial, a patient’s journey would be even more difficult to get through.

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