Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

26 Mar 2016

Celebrating Someone Else’s Milestone


20151229_223436 Madison 7

It is funny, having a conversation with my “tweenage” daughter just a few days ago, and then confirming it yesterday, turning 13 years of age, there was no magical transformation.  She was still going to be my “Ting Ting”, a nickname along with a few others that I call her at times.  She was not going to possess any super powers other than the charm she already possesses.  There were not going to be any new special privileges given to her.  So after wishing happy birthday to her, I asked her if she felt any different officially being a teenager.  She said, “no.”

But what Madison fails to realize, is that her turning 13 years old is really a big deal.  She may not realize it, but as her father, I certainly do.  She may be turning her attention to her next milestone, allowing her to be eligible to drive, but as she looks to the future, I am looking at the past.  Madison turning 13 is really a big deal.  It is certainly a big deal to me.

Unable to have biological children due to my treatments for Hodgkin’s Lympoma, it was an opportunity by the country of China to allow what no one else was willing to give a cancer survivor, a chance at adoption.  My cancer survivorship was no issue for Madison or her sister, who was adopted a couple of years later.

But my daughter’s birthday is also reminding me of another issue concerning my health.  In 2008, I officially became a cancer survivor dealing with a lot of serious, permanent, and progressive health problems.  And as my health was turned over to one of the top hospitals in the country for cancer and survivorship, I met the doctor who would spearhead my survival with one goal in mind.  And I quote the words I will never forget from Dr. O.,

“I can’t stop the things that are happening to your body.  I can’t reverse the damage that has been done.  But what I can do, is slow the process down.  I want to make sure that you not only see your daughters graduate high school, but college, maybe if they get married.  But I want to help you see your grandchildren.”

It seemed like an odd conversation at the time.  After all, my oldest was only around 5 years old.  But I had just survived a near fatal heart episode, and with awareness, and surveillance, and history not on a survivor’s side when they do not receive the proper medical attention, I knew that Dr. O. meant what he said.  He wants to make sure that I see my daughters grow well into adulthood.

I am not worried that my oldest turning 13, means that a clock is running out for me.  Quite the contrary, Dr. O. is in fact doing everything he can to make sure that my health stays solid enough to see the ultimate milestone for me.  But in the eight years since, while it has not been easy getting to see Madison’s special birthday, I know that I am doing all that I can, and Dr. O. is doing all he can as well as everyone else involved in my care to make sure that I continue to see more birthdays ahead for both of my daughters.

Posted in Adoption, Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
17 Mar 2016

Adding A New Tool To Math


I have a unique situation with my children.  We live more than a thousand miles apart.  But from the day that their mother and I officially separated, I knew communication would be an important factor to maintaining the father/daughter relationship as they grow.

Unlike my childhood, when my parents split up, my father lived fairly local.  But there were choices that he made, and long story short, his visits eventually became less frequent, phone calls eventually faded, holidays and birthdays no longer mattered.  Again, this was a choice that he made.  And this was in spite of him living locally.

But here in the 21st century, technology has enabled our society with a tremendous tool to communicate back and forth, more valuable than the telephone, because video images, in real time, allow us to now have conversations face to face with each other, no matter where we are.  Programs like Skype, Tango, Oovoo, and the popular Facetime, allow us to talk, see smiles, share tears, experience sincerity and other emotions.  Having experienced the communications issue with my father growing up, I knew this would be a critical component when it came to a custody agreement.

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So on a daily basis, on occasion more than once a day, I speak, and see, both my daughters in between the times they visit with me.  I say more than once a day, because besides the nightly “miss you” and “love you”, we have found another way to keep our relationship in tact, and my value as their father.  Just as I did when I was in the home before the separation, I was the parent that helped with homework and studying.  And with Facetime, I am able to continue this, along with using internet tools provided by the schools.  Just as I did when I was in the home before the separation, I am, continue to be, and will always be involved in my daughters’ educations.

But technology has provided to be even more valuable than that.  Recently, one of my daughters has been having an issue with one of her subjects.  And in spite of my help, still seems to struggle.  I have been reaching out repeatedly to their teachers and guidance counselor for help, tutors, anyone who could help my daughter.  Unfortunately, the school district no longer refers tutors as procedures do not allow.  I am guessing it has something to do with a litigious reason, somebody complained, sued, and now no student can get help.

Enter my world of Hodgkin’s Lymphoma, and the internet, a fellow survivor that I am frequently in contact with, was aware of my plight with my daughter’s math situation.  She spoke with her daughter who is in a grade several years further, and offered to tutor my daughter, from 2/3 of the way across the country, via Facetime.  And so, having access to the math program, the lessons for the week, and a planned quiz, the first tutor session resulted in a 95% score on that quiz.  In what can be equated to a digital penpal, my daughter is showing hope again for a course that she knew she was struggling with, and would have to face even more difficulties next year.

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It is one thing to not be able to provide help locally, but totally amazing that from one of my personal worlds, I have been able to find help in dealing with another.  Because of a friend, who I had only known through a support group for long term survivors of the same cancer I have survived, and only recently physically meant, my daughter’s education is now going to take a huge turn in a positive direction.

And I am fairly certain, my friend’s daughter, along with her other children are good kids.  And I would not doubt it, given the nature of both my daughters, and my friend’s children, that thanks to Facetime, more than just an educational relationship will develop.  Like I said, in the day of technology, this is the new version of being a “penpal.”

I am thankful to my friend for allowing this to happen.  We have both been through our individual experiences with our cancer survivorship, and other physical issues not related.  But with her kindness and thoughtfulness, it enabled me to provide another level of assistance in my daughter’s education.

Thank you.

Posted in Education, Family and Friends, Inspired By... | Leave a comment
07 Mar 2016

Needing Inspiration


When we are diagnosed with cancer, besides wanting to hear the words remission, the next thing we often look for is, well, not really a “thing”, but rather others who have faced our similar cancer, and have survived not just initially, but long term.  And if you are lucky enough, you might just actually meet others.  I cannot say I was lucky that way.  We did not have the internet back in 1989, and though I was aware of 3 others who were being treated for Hodgkin’s Lymphoma like me, I never was able to meet them.  Unlike today’s chemo suites, our chemos were given individually, isolated from each other.

As time went on, and my discovery of the internet, I soon learned that I would meet others who had survived not only Hodgkin’s, but other cancers.  Soon, as we discovered each other, many of us would arrange to meet up in small, unofficial reunions or gatherings.  For many of us, these meetings meant a lot more to us than what we could have ever imagined.

A lot of us long term survivors deal with a lot of late side effects courtesy of our radiation and chemotherapy treatments.  But when we often feel alone, isolated because either doctors, our families, or our friends, are unable to understand how we are feeling, or what we are dealing with, meeting another survivor, we know that we are having a conversation with someone who “gets” us.

Over my 26 years of survivorship, I have met many, many other survivors.  Some are in their first decade, many are in their second and third decades, and there are even some that are well into their fifth decade or more of survivorship.  But each and every one that I have met, has had their own unique history of side effects, health events, and if that were not enough, normal expected and unexpected mortality challenges.

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To be honest, I have no idea the actual number of patients and survivors that I have met over the years.  This past weekend I officially met another one though.  I got to meet her family, husband and children.  And one of the few times I noticed this, a reaction from her husband, who seemed to appreciate the fact, that his wife was meeting someone who “got” not only what she has had to deal with, but as a caregiver, challenges for him as well.

It took longer for me to drive to meet them, than we got to visit and talk.  But I believe, that she would feel the same as I do, that our society of survivors exist, support, and survive because of our need to know we are not alone, that others do understand what we have been through.

I expect to be around a long time yet, and I imagine I will meet many more.  I look forward to it.  If you are ever in southwest Florida, look me up.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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