Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

SAVE THIS INFORMATION!!! SHARE THIS INFORMATION!!!


There has been a lot of conversation on several of my Lymphoma pages and web sites, as well as my personal pages of people battling the flu and other ailments right now.  But before I lose anyone, I want to stress that this post is not just for cancer patients.  I also urge you to save this information, share the information, and feel free to print the picture posted below:

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I am just one of those that happens to pay a lot of attention to illness rates and the medical care received.  I have to.  As a long term survivor of Hodgkin’s Lymphoma, and having lost my spleen during the diagnostic and staging process, and also living with heart issues (courtesy of my Lymphoma treatments), this card has saved my life at least twice.

You do not have had to battle cancer to have lost your spleen.  Many over time have lost their spleen due to accidents such as automobile or falls.  But what was once thought of as a “useless” organ, medicine in recent years has learned that it makes a huge difference in the battles against infection.  And because of that, precautions must be taken.  Many of us are aware of our fragile situations, many are not.

So it is simple.  If you have had Lymphoma, splenectomy (asplenic), have any immune deficiency (like Vitamin D) or compromised immune system (such as those with Lupus and Rheumatoid Arthritis), or cardiac issues, please pay close attention to the information on this card.  My card specifically lists me as “asplenic”, no spleen.  You can make up your own card, shrink it, and laminate it.  But make sure that you keep it with you at all times.

This card was given to me by my doctor, one of the top doctors in the country for Hodgkin’s Lymphoma and late effects at Memorial Sloan Kettering Cancer Center.  The information is crucial.  And it will make a huge difference if dealt with in time.

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.

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