Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

14 Mar 2016

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.

Posted in Cancer, Education, Inspired By..., Side Effects, The Heart | Leave a comment
13 Mar 2016
1 Comment

A Marked Man


Here is a little known fact about me that not even those close to me are aware of… on my body I have four tattoos.  They are not blatantly hidden, but you cannot see any of them as long as I am dressed.  Together, they form a cross, actually a crosshair across my chest.

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Of course now you must be asking yourself, “why on earth would you get a ‘crosshair’ tattooed on your chest?  It is not as morbid as you think, nor as detailed, but actually quite valuable, and important to save my life.  You see, prior to beginning my radiation therapy for Hodgkin’s Lymphoma, I had been given 4 tattoos, one at the base of my neck, one each on the balls of my shoulders, and one on the middle of my abdomen.  This was done to help align the linear accelerator accurately for each of the 30 doses of radiation I would be given to help me beat my cancer.

But that does not mean that I have not thought about getting an actual tattoo.  In fact,  I have several concepts ranging from a tribute to my daughters to recognizing my fight with cancer.  One thing that stands in my way is my ridiculous fear of needles which also sounds like an odd thing to hear from someone who has gone through so much medical trauma in his life.

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I am really fascinated by tattoos, as long as they are tasteful.  And it does not matter if they are done on men or women.  I do not want to see tattoos glorifying violence or hatred.  The tattoos that really spark my curiosity are those that consume an entire area like a “sleeve”.  Again, I do have an appreciation for ink when it is done tastefully.

This unusual post was sparked by someone with an unusual location for a tattoo, although it is quite popular.  I do not recall the design exactly, something floral with some words.  But it was done on the top surface of her foot.  Now, that particular area  I am more than familiar with its sensitivity.

One of the prehistoric diagnostic tests I underwent was something called a “lymphangiogram”.  Simply, the idea was to inject a radioactive dye into the lymph vessels which would then be followed up by an x-ray, lighting up your entire lymph system.  It was a very long procedure, but to see the x-ray was quite fascinating.  But the thing I will never forget, was just how sensitive that area of skin was.  And I could only shake my head wondering how much that particular tattoo must have hurt while she was having it done.  The fact is, our bodies have a lot of sensitive areas like this, and it does not stop anyone from being inked there.

One of the first things many of my fellow cancer survivors due is get a tattoo to mark the completion of their fight.  And I admire that.

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I cannot say that I will ever get one.  Like I said, I have several ideas if I ever do decide that I want to get a tattoo.  This is just one of those “by the way” posts, an observation that sparked a memory for me.

Posted in Cancer, Inspired By..., Recreation
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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