Paul's Heart

Forgetting Or Forgotten

I spent the entire month of September, National Lymphoma Month, trying to bring awareness to lymphoma as well as other blood cancers.  My cancer, Hodgkin’s Lymphoma makes up just 1% of all cancer diagnosis.  So it only makes sense that not many people know just what lymphoma is.

But as time goes on, an even bigger awareness is needed.  Many cancers are now very treatable and curable.  Hodgkin’s has a very high cure rate, but it is not good enough, and it is not safe enough.  In any case, many survive Hodgkin’s Lymphoma, often just to have to deal with a secondary effect, if lucky, just one.  Over all, there are over 12 million cancer survivors and the number is expected to grow.

But just like people being unaware of Hodgkin’s, there is also an unawareness of cancer survivors.

I was meeting with the Survivor Committee for our local Relay For Life.  And a disappointing number was revealed.  The number of survivors attending the RFL have dropped nearly 50% over the last few years.  Together, we tried to figure out why.  In a perfect world, less people might just be getting diagnosed with cancer.  Perhaps cancers now are crossing over into other illnesses such as cardiac or lupus or MS (or any others) and simply the events now conflict with each other.

As a long term cancer survivor, I offered this observation.  For the first few years of my survivorship, I had the constant reminder of being a cancer patient/survivor because I had follow up appointments to get to.  Cancer was still a part of my life and it meant something to me to participate in Relays because I was surrounded by others who had gone through cancer.  But once I hit the magic five-year mark, my oncologist forgot about me.  And so, that became an opportunity for me to forget about cancer.  That is, until my late effects hit me many years later.

Today, protocols are now in place not to let cancer survivors be forgotten.  The American Cancer Society views a cancer patient as a survivor from the moment a patient is diagnosed.

So while that is a great concept, and the desire is there to get and keep survivors involved with the Relay, there is an even bigger population who has been forgotten.  And this could be for the very same reason I mentioned earlier with the added fact that those in our lives have also moved on without cancer presently in our lives.

When you have lost so many in your life, in my life 5 immediate family members to cancer not to mention the countless friends and acquaintances over the year I have met, survivorship is a big thing.  And not just because you beat cancer.  But many survivors have a bigger issue ahead of them.  We were not expected live so long after our cancer treatments.  BUT WE DO!!!  That is the good.  The bad is that we are living long enough to have outlived the research that had been done to determine late developing side effects, some very serious, if not fatal.

We need to get and keep survivors involved in things like the Relay For Life.  After tall, this is your moment, to remind you that you have not been forgotten.  This is your reminder that there is help available for the many things that are going on with your body that neither you or your doctors understand.

There are over 12 million of us, SURVIVORS.  It is time to become aware that we exist.  And we need help too.

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.