Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “April 19, 2017”

A Farewell… Lisa Will Never Be Forgotten

This one is tough.  I do not grieve well at all.  I generally keep stiff, silent, and strong.  Since my Hodgkin’s diagnosis, I have said goodbye to many patients and survivors, too many.  And like everyone before, there is a mark that Lisa will leave on me, forever.

In 1988, I was diagnosed with Hodgkin’s Lymphoma.  In March of 1990, I was declared in remission.  In 1997, I discovered the internet after years of just chugging along on my own.  I found internet support groups consisting of other people who had Hodgkin’s Lymphoma and were living beyond their treatments.  One such list, was found on ACOR (Association Of Cancer Online Resources).  ACOR had a list for nearly every type of cancer, including the rarely diagnosed, Hodgkin’s Lymphoma.  One member on the Hodgkin’s email list, Linda (whom I wrote previously about in another tribute following her passing), had encouraged me to join a list for “long term survivors”.  I was only in remission seven years at that point.  And from what I saw on the list, it was not necessarily about longevity, but the people on this list had a lot of things wrong with them, seemingly because of their treatments that they were exposed to.

I would find myself signing on and off of this list, mainly to announce another remission anniversary, still with no other issues.  I did not feel it was appropriate for me to be on this list really.

Then in 2008, nine years ago this past Monday, I had open heart surgery due to damage developed over time from radiation and chemotherapy damage.  I could not get back onto the ACOR list soon enough for answers to the many questions I now had.

Linda was still there, but so was Lisa.  Lisa was diagnosed and treated for Hodgkin’s in 1984.  She went through similar chemotherapy and radiation therapy as I did, but she also had to undergo a bone marrow transplant along with additional chemotherapies due to the difficulty of achieving remission.  She had late term effects, as well as battling a second cancer.

I was introduced to the concept of a “survivorship clinic.”  Though Lisa lived in Texas, and I was living in Pennsylvania, she mentioned such a clinic, specializing in late effects from cancer treatments, at Memorial Sloan Kettering Cancer Center in Manhattan.  She mentioned a specific doctor who was there, who happened to originally be her doctor in Texas.  She urged me to go to MSKCC, especially to see this doctor.  I would get to see this doctor, who would be key, and still is to this day, in dealing with the nearly dozen late effect issues that have developed since my treatment days.  These issues are progressive, and irreversible.

But it did not stop there.  Lisa would be there repeatedly for me with information, or guidance.  The amazing thing was, she too was facing her own late effects at the same time.  I have never personally met Lisa, but we had talked several times over the telephone, via email and private messenger.  At no time, would she ever let on, when she was overwhelmed herself when she was not only guiding me, but helping anyone.  The only time most of us would be aware that Lisa had her own issues, was when she posted about herself.  This was who Lisa was.  The truth is, there are lots of “Lisa’s” on various internet support groups.

There were many times, when I was so scared about prognosis, side effects from procedures, and of course, the unknown of our futures.  While she dealt with her own health issues, she had a compassion about her which clearly came from her skills and knowledge as a nurse.

We never really got to discuss personal things, but I know she loved her husband John, and her family.  Like many survivors, she tried to do with her life what she could and was able to do, all the while balancing her life along with her family.  Oh, and helping us other cancer survivors.

Over the last year, things got more difficult for Lisa.  As with me, Lisa had her own cardiac issues, and she had developed congestive heart failure as a result of her treatments years ago.  Her only hope, would be a heart transplant.  But just as our late effects often mystify the medical community, these same late effects often played a role in such critical and life/death situations, as it did this time for Lisa.  Sadly, though a heart transplant was her only hope, she had been denied twice.  One reason given was that her body may not have been able to handle the side effects of the anti-rejection drugs due to her other issues.  Her body had come so far, only to be betrayed by the risks of post surgery.  So many of us, friends and fellow survivors reached out to Lisa to advocate for Lisa and find someone willing to due the heart transplant.

I last heard from her mid-March.  She was tired.  She knew that a transplant was not going to happen in time, even if approved.  The news of Lisa’s rapidly failing health culminated in the announcement that she had passed away this past Monday.  Lisa touched so many survivors with her care, empathy, information, guidance.  Her passing will leave a huge void for all of us who turned to her, when we could not find and answer anywhere else.

I promised Lisa that I would tell of her struggles to get this transplant, and that will be another post.  But for now, to her husband John, her brother Roger, the rest of her family, friends, and fellow survivors, my deepest sympathies and prayers to you all.

In closing, this was the last post that I saw from Lisa:

“My heart is breaking because I did not qualify for a new heart at UTSWMC.  I’m so grateful to everyone for all the kind thoughts and prayers. My words are limited right now. Still trying to process this disappointment. I really felt it was meant to be for me to have a new heart. Most of all I wanted this for myself, but in the meantime I thought how encouraging it would be for other survivors that may face this challenge someday and how I could help them. Praying daily for a renewed strength emotionally and physically.

Lisa, I promise you, you have encouraged so many of us.  Having spoken with the doctor that we both had taking care of us, I know that he will also continue his work to make treatment for us long term survivors more successful.  And so many of us, your fellow survivors, will continue as we have followed your efforts, to help others who struggle with getting the late term care so many need.

She Calls Me Lucky

***author’s note – this post was actually drafted on Monday, April 17th.  I paused midway through the post, when I received news that a fellow long term cancer survivor that I have known most of my survivorship had passed away.  The second part of this post was very difficult to write, and I want to stress, that for the many “newbies” of Hodgkin’s survivors, because of long term survivors, a better treatment regimen is used to lessen the severity of late effects, and a more efficient follow-up protocol exists for you as well.

I had a totally different story in mind for today.  Today marks the 9th anniversary of my double bypass, caused by late effects from radiation and chemotherapy treatments for Hodgkin’s Lymphoma.  I wanted to talk about a conversation that I had with one of my daughters.  They were not born when I battled my cancer.  They were less than five years old when I had this surgery.  And a few years later, they would witness me being rolled out of my house at 4am on an ambulance stretcher, eventually diagnosed with septic pneumonia.

Now with my children older, I have decided to tell them about what I had gone through in my past.  They are learning about the body in Health class in school, and the various systems of the body and diseases we face.  With what they have learned in school thus far, it gives them a totally different perspective knowing someone who has faced a deadly situation three times.  To which my oldest daughter responded, “you’re really lucky Daddy.”

Because it came from my daughter, I know it was a sincere and genuine compliment.  And to be honest, had it been anyone else throwing the “lucky” comment my way, I would respond back that I do not feel lucky at all, far from it.  But clearly, my daughter sees something in my survival that I cannot.

Most of us who have dealt with Hodgkin’s have been told, “if you are going to get a cancer, Hodgkin’s is the one to get” inferring the luck of the cancer diagnosis.  We do not feel lucky.  When told that I needed to have open heart surgery for a double bypass because the main artery going to my heart was restricted 90%, my cardiologist told me I was lucky.  I prevented my fatal heart attack before it happened by coming in when I did, because it was not a question if it would happen, but when.  The fact that I had symptoms for four months… luck had nothing to do with it.

I have many more examples.  The last thing I feel is lucky.  But as I do for so many in my life, I take on the description of “lucky”.  It makes people happy to think that there is some force taking care of me.  It allows me to not burden anyone with the many health issues I face, all caused by the treatments that were supposed to save my life.  I am so good at it, even one of my doctors once said, “you look great.”  And then I told him how I felt, test results and exams confirmed, and then our conversation dealt with reality.  But just as what the doctor felt he saw, is what I present to anyone who looks at me.  I do what I can to make sure that everyone is protected.  As another doctor once put it, my post cancer survival is about managing the late effects… they cannot be cured or reversed.

Part 2

A post came across my newsfeed, which put the brakes on this post.  A friend and fellow long term Hodgkin’s Lymphoma survivor, had just passed away from one of the various late effects that she had to deal with.  She was just 50 years of age.

I had already been working on a post for her revolving around her struggles to get approved for a much needed heart transplant, that she had been denied twice.  You see, though diagnosis were different, both of our hearts had been damaged by radiation and chemotherapy treatments for our Hodgkin’s.  And I will get that story done soon.  Instead, now I will do as I have done for so many others, work on posting a tribute to someone who played such an important part in learning about , dealing with, and living with, the late effects of treatments that saved our lives, clearly at the cost of health in the future.


But here is the reality… luck has nothing to do with our survival.  Of the four photos above, only I am still here.  All three of us dealt (deal) with damage to our hearts.  On the outside, we all looked fine.  And for the most part, we never let this issue show as best as we could (and most of us have even more issues).  All that mattered on the outside, you did not have to worry about us.  We did not ask for pity, just understanding.  We had/have bad days, but we did our best not to let it show.  This is has nothing to do with luck.  In fact, for me, it only raises the level of survivor guilt that I battle every day even higher.

Those of us, who hold our “Pandora’s Box” in our hands, who actually are aware of the many issues that we deal with because we have found doctors who “get” that our issues are not simply about “just getting older”, go through our survivorship in a “maintenance” mode, the majority of our issues cannot be resolved because the risk of correction is worse than the risk of the diagnosis itself.  In other words, we must wait and watch.  We have baselines, and then annual tests show the progression of our issues, and then, once the risk of correction is less than the diagnosis, then we can hope for help.  Or as my latest friend, lost hope.  She wanted the heart transplant, which was her only chance to live at this point.  After being turned down once, her level of optimism also dropped, as did her heart function.  She only had the will to try one more time, having lost that bid also.  It appeared there were increased risks associated with her complicated Hodgkin’s history, and was denied a second time.  But she did want the transplant anyway.  Having been turned down again, she came to terms that there would be no more opportunities.

I do not feel lucky at all.  And there are many more other friends that I have lost from my world of Hodgkin’s survivors, than those pictured above.  While it is nice, to have friends who try to encourage living with a “positive” frame of mind, the reality is, it is important that I am aware of what my body has become.  If I am to have any chance of an even longer survivorship, I need to be aware of where my body is at in its progression of late effects.

The reality is this though, it is no longer good enough, just to be able to find a doctor who has finally been educated on diagnosing and managing these issues, sure, that gets us through life, but what happens when our body gets to that point, that we finally need a major intervention, medicine still is not ready how to save our lives.

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