Paul's Heart

Tammy

One of the posts I never wanted to write about.  I actually don’t want any opportunities to write memorials of fellow cancer survivors.  When one passes, it is a stark reminder, that in spite of beating our cancer, issues that may have developed from our treatments, we are still vulnerable.  Our fight is not over.

I barely had my first computer when I first came across Tammy.  In fact, I recall using “dial up” with a 56k modem and an “aol” address.  We were both on a list serve (an old style email list) for people who had battled Hodgkin’s Lymphoma.  We were both around the same age.  Treated around the same time, approximate two years before me, though different cancer networks in different states.  In spite of the similarities, she was treated with a much stronger attack of treatment than me.

I was barely five years passed remission.  Tammy spent a lot of time, encouraging me to keep vigilant on follow-ups, all the while, occasionally filling me on some serious issues that she dealt with, related to her treatments.  I could not understand, why she was dealing with these severe issues, and I seemingly had none.

Her list of health issues caused by her treatments is way longer than I could write or even comprehend.  I would eventually develop some of the many issues that she experienced.  And if you have followed my blog, my list is only 10% of the size of Tammy’s issues.  And the number of critical events that she experienced defied comprehension that we would have a friendship decades long.  But she just kept going.  The energizer bunny had nothing on her.

Regardless of how many issues she faces, or how often, life for her continued on.  So proud of her children, I saw them all grow, and much to her surprise, witnessed her becoming a grandmother, several times.  Always an inspiration to me with what she had been through, the one comment that she said to me that always has stuck in my head, as an order to never stop fighting, “I never thought I would see being a grandmother.  And look at how I have been blessed.”  I will never forget those words.

My oldest daughter’s name is Madison.  Upon finding out that she was having a granddaughter, was also going to be named Maddison (just a coincidence), seeing all the photos of “my” Madison in cute baby clothes gave her a rush of excitement to once again shop for baby girl clothing, something she had not experienced since the birth of her daughter.

Tammy, like many of my fellow survivors, was 100% selfless.  No matter how awful she felt, even in her weakest moments, when she had the strength to respond, she took those moments.

We lived in different states, but still made arrangements for families to get together, including gatherings of other Hodgkin’s survivors.  I just posted this photo the other day:

We were not just fellow survivors.  Our lives were not just about cancer and survivorship.  She was one of the first to show me there was still so much to be thankful for, so much to strive for, and so much to live for.  But I will be forever grateful for learning to face the health issues with a resolve not to accept anything less than the best care, and to not settle for medical personnel having no idea what to do with us.

I won’t lie.  I never allowed myself to feel sorry for myself, or to feel I want to give up, because of Tammy.  Everything she had gone through, I had no right to ever say, “I’ve had enough.”  And now, the one I looked to, to keep me going forward, is gone.  Don’t get me wrong, I have so many reasons to keep going on myself.  But I always believed, as long as Tammy was still here, I was still going to be here.  If anyone was proving immortality, against all odds, it was Tammy.

Tammy, I am selfish.  I wish you had more time down here.  But I know it was hard.  And now you get to spend some time with your other grandson, to spend a belated birthday.  I will never forget you and what you did for me, to get me through some of the toughest moments I faced in my life.  You are going to be so missed, not just by me, but those wonderful children I got to witness grow, and all the beautiful grandchildren you were blessed to spend time with.  There is also a large community of survivors who also knew you and what you had gone through.  It does not hurt any less, the only consolation being, you are no longer in that pain.

Becoming A Long Term Survivor

As of 1988, the only thing I knew about cancer, was people died from it.  Patients would go through surgeries and treatments and hopefully get to hear the word “remission.”  But you never heard of anyone living a long time after if they were ever told they were in remission.

I was twenty-two years old at the time.  The only computer I had access to, was for operational needs of the company that I worked for.  Though our computers would work from one store location to another, we had no “internet” as it is known today.  There was no way to seek out anyone else who had gone through Hodgkin’s Lymphoma to see if they were cured, still living, or passed away.

From the moment I heard the words, “you have cancer,” I had it in my mind, all that I needed was to hear that just one other person beat it, and then I would too.  I had an uncle who spoke of a friend, who in the 1970’s had dealt with Hodgkin’s Lymphoma.  And with a little research, I found a professional football player with the New York Giants, Karl Nelson, had battled Hodgkin’s.

After all that effort, I had heard of two individuals who had faced what I was staring at.  Now, all I needed to do was make contact.  Long story short, especially with how quickly things move with a Hodgkin’s Lymphoma diagnosis, I never made contact with anyone before, during, or after my treatments.  I was on my own.

I remained “alone” through the first five years following the end of my treatments.  And then, I bought my first computer.  With that, a thing called “the internet.”  I soon learned that I could research things over the computer, and stumbled across a “list serve” (an old term for an email list), with a membership of Hodgkin’s Lymphoma patients and survivors.  HOLY SHIT!  There were more people like me!  A lot more people like me!  As it turned out, we were scattered all over, not just the United States, but all over the world.

Then, I found another email list, actually part of a larger grouping, through the American Cancer Online Resources, ACOR for short.  This organization covered not just Hodgkin’s Lymphoma, but so many other forms of cancer, as well as other issues associated with dealing with cancer, such as money, fertility, etc.  It was soon after signing up for information about Hodgkin’s Lymphoma, it was recommended to me that I check out one of the lists on ACOR for “long term cancer survivors.”

At just over five years of survivorship, I hardly considered myself “long term.”  But the length of my survivorship had nothing to do with my status, rather, those members on this list, had been experiencing late developing side effects from the treatments that cured them of their cancer.  The problem?  Medicine barely recognized these issues because, they just made no sense.  And therefore, often got undiagnosed.  And if you did get a proper diagnosis, it was undetermined if you would get the proper care to treat that issue.  At least, there was a group of people who understood each other and what we were going through.  There were others who could answer our questions, and give us the tools that we needed to approach our doctors.

And then… Facebook!  With the introduction of Facebook and other social media, communications between current patients and survivors increased to levels unimagined by me in 1988.  Soon, various groups and subgroups popped up, consisting of thousands of members, not just all over the country, but all over the world.

Not only is information being shared by us with each other, but with the medical community as well, and more of us, affected by effects from our treatments, are now finally getting the help needed to manage their quality of life.

It is not just about sharing information either.  Even during the early days of the list serve, the need to actually meet other survivors, to put a face to names, to see with our own eyes, that others have survived.

And just a couple of years ago, a new organization was created, especially just for Hodgkin’s Lymphoma and survivors, called Hodgkin’s International.  The amazing organization works to bring awareness and knowledge to survivors and the medical community of the needs and issues related to Hodgkin’s Lymphoma.

This progress has been recognized in just my thirty years of cancer survivorship, something, besides raising a family of my own, I never thought I would see.

I have given countless speeches on survivorship and the issues we face travelling all across the United States over the years.  I have been published in various newsletters and books, even having one of my writings performed (see “My Dad Was Just Like Me” at https://www.youtube.com/watch?v=3KI6LQu2Nts ).  And I am finally writing my first full length book on my experiences as a cancer survivor.

Becoming a long term survivor has not just been about the number of years since I heard, “you are in remission.”  Becoming that survivor has meant not letting cancer define who I am, but has taught me that even though, I cannot make a difference in certain aspects of life (I cannot donate blood or organs as a cancer survivor), I can make the difference in sharing my experiences, my knowledge, my resources, and the stories of fellow survivors.  I do not need to be a celebrity or pro athlete that had Hodgkin’s Lymphoma to make a difference.  That is what being a long term survivor has meant to me, making that difference.