Paul's Heart

On any level, whether as a child or an adult in the work force, you may have heard the comment, “The information is on a need to know basis and right now, you don’t need to know.”  But what if you really do need to know.

One of the knocks that I have taken over the years of survivorship from both family and friends is the fact that I am always reading things on line about cancer, side effects, and survival.  “How depressing” is usually the punctuation mark at the end of the statement.  No matter which way I try to defend myself, the response is always the same, “it puts ideas into your head” or another depression comment.

But let’s face it.  How would  you feel when you go to the doctor with obvious symptoms, and the best you get sent home with is a narrowed-down diagnosis and a prescription of prednisone?  Or perhaps you are given a diagnosis of a particular cancer or another serious disease and half way through treatments you develop a side effect that your doctor was unaware that could happen, regardless of its severity?  Maybe you do not want to feel as if you are going through a serious life issue on your own even if you have immediate familial support.

When I was diagnosed with Hodgkin’s Disease back in 1988, I had no internet.  The original doctor I saw even gave me the wrong diagnosis due to the rarity of this cancer.  I have even confirmed on documentation obtained from my oncologist that no one had any idea that I would be dealing with the late side effects from my cancer treatments.  I had no support groups and no one from my family had ever had Hodgkin’s Disease.  Even when I showed up for my consult before starting treatment, I presented my oncologist with a full page of questions that I had wanted answered before I even let them stick a needle in me.  I was told he “didn’t have time.”

That all changed in 1997 with my first computer and a recommendation that I check out this internet group that dealt with Hodgkin’s Disease.  From there, I found more than two dozen valuable web groups that offered support for Hodgkin’s Disease.  The only thing was, I was approaching my eigth year in remission.  I did not need this type of information.  At one point, someone recommended that I should instead check out a web group that had long term survivors from the same cancer as me.  Initially, I felt I had no place there, as nearly all of these people were dealing with such horrific late effects.  But for the most part, I was fine.

Fast forward to 2008, and I have been told that I need to have emergency heart bypass surgery due to late effects of raditation therapy.  From the date of my release from the hospital, I reintroduced myself to this group of survivors, and I have never looked back.  As much as a benefit to my soul to be able to relate to others, this list provided me with answers, and directions to find the proper care and information of what else to look into.  Yes, it has meant a lot of doom and gloom.  Other issues have been found.  And on at least two other occasions, resulted in trips to the emergency room, one via ambulance.  But I have been informed.  I know what the doctors need to know and look out for.  I know what questions need to be asked.  But it can be overburdening, like opening Pandora’s Box.

Wendy would much prefer if I were not involved with these lists, as are many others in my family.  There are those who simple contribute by offering “you’ll be fine.  These things don’t happen to everyone and besides, you look great.”  No matter how much I protest their confidence and my need for this information, I cannot convince them.

Recently, during my brother-in-law’s memorial service, a friend of his was offering a tribute by relating a story of how Mike had been introduced to another patient recently diagnosed with ALS, Lou Gehrig’s Disease, as Mike was battling.  Mike had reached out to this patient via email to offer support and advice, having “been there done that.”  One of the key things that was mentioned by Mike, was the need to be informed.  That his wife had often suggested how depressing it was to be constantly on the internet looking up things related to ALS.  Of course it is depressing.  But there is a comfort that only someone who has gone through similar can provide.

As Mike told the new friend, the internet gave him information that he could ask doctors if certain things could happen during his illness, side effects, emotional struggles, resources for handicap preparedness, and so on.  He learned questions to ask his doctors in order to assist his care, and prepare for his future.  The internet taught him the different types of ALS as well as stages.  He learned acceptance.  On his own, Mike could never have dealt with this.  And nor could I with my health issues.  It is a reality much to similar to that of the original illness.  More than 22 years later, I still learn new things about what is happening to me.

I know every drug and amount of radiation used on me and their side effects.  I know all of the tests that I underwent as well as biopsies.  I know the ramifications of a splenectomy.  I know that even having knowledge cannot prevent the inevitable of sudden onsets such as cardiac or sepsis.  But I am better prepared because I have met and know others who have given me this knowledge.  I am on a need to know basis, and right now, I do need to know.