Paul's Heart

Life As A Dad, And A Survivor

“Hello Dolly… Well, Hello, Dolly”


“Hello Dolly,……well, hello, Dolly
It’s so nice to have you back where you belong
You’re lookin’ swell, Dolly…….I can tell, Dolly
You’re still glowin’…you’re still crowin’…you’re still goin’ strong”

– Louis Armstrong, from the musical, “Hello Dolly”

12065490_1651252201830884_899320293373041168_n

There is no doubt this is how Dolly was being greeted this morning.  This is how I knew Dolly… well, for most of the time anyway.  Like me, Dolly was a long term cancer survivor of Lymphoma.  Like me, she suffered late side effects, and eventually another battle with cancer, as if the first time around was not enough for one person to go through.

I never met Dolly, whose actual picture would eventually appear on her Facebook page, because of the droves of other survivors who would have to physically meet, the wonderful spirit, who, when faced with one challenge after another, would always manage to muster a smile, offer encouragement, all the while, maintaining order in her life.  And there were plenty who would get to meet this gem of a spirit.  Unfortunately, I would never get the chance to actually meet Dolly, but we exchanged emails and texts, to discuss certain admin issues with the support pages that she created on Facebook for those of us who struggle emotionally and physically with the late effects from the treatments that cured us of our cancer.

Dolly had a “travelling companion” besides her husband Dave, a doll named “Nelly”.  Kind of like “Flat Stanley” in schools, Nelly was eventually adopted by another survivor, after it became clear, Dolly would no longer be able to travel, and so, pictures of Nelly’s adventures would appear, giving many of us, Dolly included, even a slight smile, because each picture would remind us of Dolly.

I am sure that I am not the only one, but Dolly also took time to help others with other issues or struggles in their lives besides survival.  That is just who she was.  Even up until days ago, she did all she could to keep in touch with us.

I have met hundreds, if not over a thousand cancer survivors over my survivorship.  And I can tell you, the rush that comes over us, when we meet someone who “gets it”.  But when we choose to meet someone in our situations, it also sets us up for the possibility of heartbreak.  Because as a survivor of cancer, with late effects to deal with, things can change just like that.  But those who got the opportunity to meet Dolly in person, neither was disappointed.  I know many of the faces she got to meet, and that meeting always meant something so special to each and every one of you, and especially Dolly.

I have known, and still know many people I draw inspiration from in my survival, but Dolly has been the second person, who I consider very influencial in my survivorship, that I have never personally met.  The other, was a woman names Linda, who urged me to not only advocated for cancer patients, but to become aware of the world of late effects for cancer patients who would go on to live long lives, and need help.  It is just at one point, I never thought I would be one of them.

I am sad for the passing of my friend.  I am certain it is even harder for those who knew her best.  The testimonies being given on her Facebook page, and replies to the post by her husband speak volumes.  For those reading this that are on those Facebook pages, that is what this group is for, to help us deal with the grief and sorrow, and help each other to survive.

The photo below is the cover from Dolly’s Facebook page.  This was definitely Dolly.

12195794_1657270997895671_7399575412973622768_n

Life Saving Bling


1469284803948

I suffered a wrist injury at work in 2003.  From that point on, I never wore anything on my wrists.  In fact, I cannot tell you the last time I ever saw a watch.  But as you can tell from the picture, I do wear something on my wrist today.  In fact, I have done so since 2008, when I had my life saving emergency open heart surgery.  And you can tell that it looks quite worn as it is over eight years old now.  And like the wear on the med alert bracelet, the irony is that it does not reflect the wear and tear on my body that late effects from treatments of radiation and chemotherapy have done.  I will get back to that bracelet in just a moment.

Once it was discovered that I was suffering late developing side effects from extremely harsh and toxic treatments for cancer decades ago, I had the daunting task of finding someone who could not only diagnose the issues, treat the issues, but also help me manage those issues, for the rest of my life.

I found such a doctor at Memorial Sloan Kettering Cancer Center in Manhattan.  Dr. O had not only studied Hodgkin’s Lymphoma for more than three decades, he had also been studying the late effects from the toxicity of chemotherapy and the never-ending destruction caused by high levels of radiation (in my case, 4 times the lifetime maximum of exposure).  Though it is not a joke, the inside comments made by patients like me, “radiation… the gift that keeps on giving.”  This was also what caused the need for my heart surgery.

Anyway, you can find out about the heart surgery by going to the page, “CABG – Not Just A Green Leafy Vegetable.”

The first thing that I had to do as a patient, was gather all of my health records from my oncology team.  This proved to be a daunting task as I was more than 18 years out from treatment.  My chemo records were incinerated.  Probably only due to regulations by the NRC, I was able to recover my radiation records which is the only reason I know my exposure levels.  They also had copies of my surgical records.

Through medical history of treatment back in the late eighties, my general health records as well as knowing the drugs used in my chemo cocktail, all Dr. O could do, was estimate what dosages of chemo I was given.  The paperwork that I now had in my possession was enough to fill an entire school backpack.  And that backpack travelled with me all the way to New York City.  In fact, that backpack travels everywhere with me, because any kind of emergency medical care I may need, my backpack provides crucial information that will be critical to me surviving any kind of trauma or illness.  Because of having Lymphoma, and being asplenic (having no spleen) courtesy of my diagnostic procedures, I cannot be treated as a normal healthy human being.  I have a higher risk of infection, bleeding out, and more dangers.

As you can tell, it is not really practical carrying this backpack around with me everywhere.  Technology in doctor offices across the country now make it possible for doctors anywhere to see your records, no matter where you are.  But just because they are available does not mean that the doctors will use it.  As a long term cancer survivor, I have learned that I have to advocate for myself.  That means not settling for a doctor blowing me off, because the “symptoms just don’t make sense for someone my age.”

In the event of an emergency, before I even get to an emergency room, I have had to deal with paramedics.  Any paramedic caring for me, needs to know immediately what kind of patient they are dealing with.  Which is why, not just me, but patients with special needs wear these med alert bracelets.

In my case however, my bracelet does not list just one disease.  With more than a dozen different health issues that I deal with, there simply is no room on the bracelet.  So I had to adapt.  I had to use what little space I had available to give as much information.  On the front side of the bracelet, lists my name, that I am a Hodgkin’s Survivor from 1988 as well as a 2x CABG Survivor from 2008.  Immediately under that it says, “see reverse side”.

The first line instructs whoever is reading the bracelet, to immediately pull my wallet out, and locate two miniaturized cards that have all my medical diagnosis on them, and how to treat me prophylactically to prevent infection.  The next line instructs them to call my primary care doctor and her phone number, and my specialist at MSKCC and his phone number.  Any medical personnel following these instructions, increase my chances of survival.

Though I have  yet been able to do so, there are many other survivors who have been able to “save” their medical records on a “zip drive” or CD to give the information to any doctor treating them.  But the other night, while visiting with a friend, I noticed he had a different kind of med alert bracelet on his wrist.

1469284722250 1469284750225

It took both the alert, and the information, and put them into one item.  Most paramedics now use laptops and by simply plugging in the bracelet (important if a patient is unconscious and cannot alert the paramedic that they have important medical information on a USB drive).  And these are not expensive either.

For my long term cancer survivor friends, for cancer patients going through treatment right now, in fact, anyone dealing with a serious illness or condition, my blog has always been about information, and hope.  I hope you take this introduction of new technology, and take care of yourself.  Having your health history literally at your fingertips, can make all the difference in saving your life.

Finally, Someone Is Stepping Up For Us


I consider my life split in half in that my life went through a major change when I was diagnosed with Hodgkin’s Lymphoma back in 1988 at the age of 22.  Prior to my diagnosis, though I felt I was a considerate, well-mannered, nice guy, for the most part, I kept to myself, not necessarily go out of my way to help others unless I was approached.  This type of behavior is common amongst young people.

But the very first thing that I wanted to do, following the completion of my treatments, was to help others take on their cancers, to deal with the many emotions they would face, to help them locate help with the many issues that I had experienced alone, knowing that my help could make a difference in dealing with the stress associated with diagnosis, treatments, and of course, life after cancer.  I wanted to become an advocate for cancer patients.

Going through the cancer journey back in 1988, I did not have the internet.  There was no treatment suite with televisions, dozens of other patients, food being served, entertainment, therapy animals, etc.  There was no “bell” that I got to ring when treatment was done to celebrate.  Though I tried to find others like me, it was an impossible task.  And for those who are young enough to never know what life was like before the “selfie,” there are no pictures of me prior to treatment, during treatment, post treatment.  I have nothing to document what I experienced other than the medical records I now possess, for reasons I am about to get into.

Approximately eight years after my remission, and now fully involved in a cancer counseling program called “Cansurmount” through the American Cancer Society as a volunteer peer counselor for cancer patients, I discovered the internet.  I located a listserve of people who had only had Hodgkin’s Lymphoma (we called it disease originally, but it was unofficially changed because “disease” was felt to contribute to the stigma of having cancer as being bad).  From there, I was contacted by Linda Zame, a long term cancer survivor.  She had invited me to join her listserve, survivors not just of Hodgkin’s, but all cancers.  I did not really feel I fit in, because I did not recognize myself as a survivor, only being less than ten years post remission.  Again, she strongly encouraged me to join this list, and I did.

I was overwhelmed with what happened next.  Story after story from cancer survivors, not about the wonders of life after cancer, but dealing with horrific side effects from their treatments.  I immediately removed myself from this list, and explained to Linda, this was not a list I belonged to.  I was fine.  I was eight years out, and other than fertility issues and some permanent hair loss, I did not “fit in” on this list.  I did not have these kinds of issues.  Linda tried to convince me otherwise.  I would join and unjoin several times over the next few years just to see if things had changed.  But then in 2008, something did change, in a big way.

20131109_200245

I will not go into the full story here, you can read it on the page “CABG – More Than A Green Leafy Vegetable.”  I needed to have emergency heart surgery, caused by treatments from my cancer.  All of a sudden, I was like those 400 people on that listserve that I did not think I belonged.  Though I did not pay attention to her, Linda was trying to convince me, that although things might have been okay at that point, I needed to have the knowledge of what I had the potential to deal with.  Doctors and medicine did not have it.  It was a “few” patients that were advocating for everyone else with a new concept, caring for those who were given such barbaric treatments, that somehow lived past the magical “5 Year” mark.  Medicine never bothered to study the long term effects of treatments because we were not supposed to live that long, especially after 5 years.  But the truth is, there are over 12 million cancer survivors, and only a few hundred of us seemed aware of this problem.

Because of awareness, and that internet support group, I located one of the few clinics that handled patients with my particular issues, Memorial Sloan Kettering Cancer Center.  At that point, all of the issues that had developed in my body over the years since my treatments had been diagnosed, more than a dozen of them in fact.  I finally had answers why my body and mind, felt the way it did, when on the outside, I looked completely fine.  While my issues cannot be reversed or undone, my life now is about management, managing the pain, managing the symptoms, preventing the increased risk of injury or illness.

But now my decision to advocate changed to include not only cancer patients, but also cancer survivors.  As I got more involved, I would find myself getting frustrated with “fundraisers” claiming to help cancer patients.  And there was nothing to help survivors.  The only way someone was actually going to make a difference, was to personally make the difference.  Sure, there are major charities that raise tons of money, and will highlight a few success stories to show their organization’s value, but in my experience, when I needed the help, several times, they were NEVER there for me.  And I felt that there were too many in my shoes that needed help.  So yes, I do believe one person can make a difference.

I ramped up my internet involvement to include patients and survivors to do what I do best, get information out.  I wanted to help people find facilities that handled our unique cases, give people information on financial resources, to tell them that they were not alone.

Of course, one of the biggest resources for me was Facebook.  I now belong to more than 2 dozen pages/groups, and combined with “Paul’s Heart”, I am trying to get the message out about survivorship and the needs that we face.

I can no longer do the things at the level that I once used to.  There have been major changes in my life, and I have had to reduce my advocate activities.  But I am still involved on the internet.  Which brings me to my next point.

One of the groups that I belong to, has taken on a huge task, and I believe what I am witnessing will be a huge game changer, and yes, it will be because of social media, and advocates like me, trying to speak for those without a voice, guide people without a compass in the life of survivorship, to finally provide answers, to let them know that their issues are very real, and they are not alone.

I am not prepared to disclose this wonderful effort yet, because it is still in the planning stage.  But unlike other ideas that I have witnessed over the years, this project has a clear focus, and an initiative and drive like none I have ever seen before.  Even better, because of the attention it will get from Facebook, instead of reaching 400 on a listserve, the potential is to reach millions of other survivors who are made to feel like hypochondriacs because the shell of their bodies do not tell the same story as what is happening inside.  I am extremely excited for when this particular group is ready to go live.  To my knowledge, it will one of the only organizations to reach the millions and millions of cancer survivors.  Medicine is finally starting to catch up to us, but not quickly enough as new patients are being followed more closely because they know the long term risks associated with treatments.  But for the millions who are now lost, no longer followed up, have no idea what their bodies are going through.

Linda, thank you for convincing me I needed ACOR.  And to my friends creating this upcoming organization, thank you, and keep pushing, you have the momentum and the support.  I cannot wait to spread the word on this one.

Post Navigation