Paul's Heart

Awareness Works!

I have mentioned repeatedly how little knowledge people have of lymphoma.  In spite of famous celebrities being diagnosed with lymphoma, it rarely catches the attention or inspires any movement toward a cure.  Funding for research barely exists because of the belief that it is better to fight the bigger cancers believing that once that victory is one, finding cures for the little lesser known cancers will be sure to follow.

In other words, patients and survivors of blood cancers – lymphoma and leukemia – we are on our own.  But we have it in us to create a movement to find our cures.  Look at the success of the ALS Ice Bucket Challenge.  Susan G. Komen did not just happen over night.

I have told my story here over the last year and a half.  And once I started sharing stories of other patients and survivors, viewership picked up even more.  “Paul’s Heart” was being shared across multiple sites.  Even “Stephanie”, the subject of “Stephanie’s Words” posted last week was shocked when I told her that her story reached over 4500 people between my blog here, and the “Paul’s Heart” Facebook page.  This is not something to be taken lightly.  “Paul’s Heart” has momentum with stories like this.

And with more stories, as I approach 10,000 views on this blog alone, more people will become aware.

I had several goals when I started “Paul’s Heart”:

*  more awareness of lymphoma

*  inform survivors and comfort survivors that the late effects they are dealing with from their treatments are very real

*  improve protocol of treatment surveillance before, during, and after treatment

*  eventually write my story into a book and other projects

Here’s how you can help.   Do you have a story about a journey through cancer that you would like to share?  It can be from the patient, caregiver, or survivor point of view and any aspect of the journey itself.
If you are interested to tell your story like I do, or like the stories from Michael and Stephanie, please email me at pedelmanjr@yahoo.com .

And from my heart, I thank you for all of your support.

Light The Night – So Much More Is Needed

Tonight, I participated in my first “Light The Night” walk for the Leukemia & Lymphoma Society.  For many of you, this may come as quite a shock given how much I write about my cancer history and the stories of others.  I will admit, I have known about the LLS for most of my survival, but only recently became aware of Light The Night in recent years.  Like so many before, I concentrated most of my efforts for cancer support with the American Cancer Society through the Relay For Life and Making Strides.

I do not want to take away the efforts of the Relay and the ACS, but as I have pointed out several times throughout this blog, the whole idea of even needing the LLS and Light The Night, is just as important as the awareness of blood cancers such as lymphomas and leukemia.  I recall memories of my childhood where the majority of the conversations of cancer were dominated by one major killer, leukemia.  Sure, other cancers existed, but leukemia was pretty much the frontrunner at the time.  But since then, other cancers became more common, and more popular, especially to support.  There is no argument that breast, lung, prostate, and colon cancer are some of the biggest and most popular cancers today.  And because of that, the American Cancer Society, and most of medicine today, is focusing on cures for those.

But for those with a lesser cancer, like mine, Hodgkin’s Lymphoma, which only makes up 1% of all cancer diagnosis, the goal of the ACS and medicine is to find a cure for those bigger cancers.  The school of thought being that if they can solve the big ones, then the little cancers will be some much easier to beat as cures will surely follow.  When in reality, lymphomas and other blood cancers are beatable cancers.  And the cures are so close.  But lymphoma and leukemia do not get the support for research like the other cancers do.

I wrote about the “Faces Of Lymphoma” last month, hoping to spark some debate about all the popular people who have had lymphoma.  Society seems to respond when celebrities face breast cancer, colon cancer, surely that would have the same effect if people knew all the celebrities that had lymphoma.  Nope.  What is it about lymphoma really, that it does not matter to society to push for that cure?

Then I published two other stories, both with different endings, about Michael and Stephanie.  These were two of my more popular posts, and I do hope that perhaps seeing their pictures, would stir up support for a cure.

And so on this night, I met two very important people from the Leukemia & Lymphoma Society.  They are involved with the Southwest Florida chapter.  I spoke to them in great lengths to find out what can be done to finally take that next step to not only finding a cure for lymphoma and leukemia, but how to take care of its survivors who have had to battle the side effects from their treatments.

Next year, will be bigger and better.  I want to make sure of it.  As we finally made our walk, as I looked around at the 500 or so people, very few white balloons which symbolized survivors.  There were way too many gold balloons which symbolized loved ones, I am not sure if they were still living or passed away.  But seeing how I did not see a lot of white balloons along with the gold ones being carried, I could see how much more needs to be done.

Just as when I did my first Relay For Life, my first Light The Night left me filled with emotion.  I no longer consider my survivorship of 24 years as “no big deal.”  Considering how many people still die from lymphoma, I am one of the lucky ones.  I want everyone to have the opportunity to survive this awful disease just as I have, minus the late effects of course.