Paul's Heart

Life As A Dad, And A Survivor

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.

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9 thoughts on “A Farewell… Lisa Will Never Be Forgotten

  1. Roxanne Tini on said:

    Such a beautiful, loving memorial. Thank you Paul.

  2. Rob R on said:

    Nicely said Paul, thank you for writing about Lisa and for sharing about her caring and kindness to you and to so many long term survivors.

  3. Kimberly Smith on said:

    Paul, that was absolutely beautiful and though I didn’t know Lisa personally, I feel you have described her beautiful soul perfectly. Thank you for allowing us to know her better and what a strong survivor and advocate she was for all of us.

  4. Jennifer Henrich on said:

    Paul-sorry to hear about the loss of your friend. This post is coming at such a time in my life as I too may be facing a transplant. Or, possibly not being approved also as in the case of your friend. Sorry for your loss

    • Jennifer, this was indeed a very frustrating and sad time for both Lisa and her fellow survivors. I plan on following up with her story of her transplant frustrations. Any insight you may be able to provide, I would definitely be interested in hearing. Please feel free to contact me off this blog for your privacy at

  5. Paul, this is Roger- Lisa’s brother. It was hard reading your post without crying. I was reading it today on the plane ride back from her funeral. Your post was printed in full and laminated for all to read at the service. I then personally put it inside John’s house in his living room for him to reflect on.

    Lisa would not talk about the details of what she did only that she managed a support group list. However she often talked about it. She really cared for everyone on that list as well as the FB page. You all definitely helped her and gave her strength and a purpose.

    I’m extremely humbled by what Lisa did and especially how so many were impacted by her. I couldn’t have asked for a better sister. I’m sure going to miss her.

    One thing is for sure- she never believed in woe is me. She lived life to the fullest and often encouraged me to slow down and smell the roses. You never know when your last day is.

    Thank you so much for taking the time to write such a beautiful piece!

    Roger Nolter

    • Roger, I am touched by your response, as are many other survivors that I discussed your sentiments with. Your words prove that Lisa’s compassion and care truly did go beyond the keyboard, that her words were not just words. She truly cared.

    • Lisa burkitt on said:

      Roger, please accept my sincere condolences on the loss of your Amazing sister. Paul speaks for so many of us whose lives she saved. Paul is also a warrior that helped save me. Please take comfort that there are many of us who will carry her flame. Hugs!

      • Lisa (Love the name BTW) thank you very much. It is very humbling to know the impact that Lisa had. Thank you for carrying her flame through this journey of life.

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