Paul's Heart

Life As A Dad, And A Survivor

Never Done With Cancer

My last day of chemotherapy took over 270 days to reach.  It should have been thirty less, but low blood counts delayed my seventh cycle, which to this day I will believe was the difference having taken the full chemo, and not a modified dose, and over twenty two years of remission.

My chemotherapy nurse Brenda had walked over to my chemo chair and prepared to remove the final IV line of my poisonous cocktail of drugs.  Brenda was a petite and very soft spoken woman.  Throughout my cancer journey, Brenda was more than a chemo nurse to me, she was like a “cancer Mom” to me.  She was always encouraging me from the first injection and celebrating with me on the final day.  And with a “mother’s love”, she helped me out of the chair, pulled me in to the gentlest of hugs, pulled slightly away, and with the biggest smile, looked into my eyes, “You’ve done it Paul.  You got through it.  As you walk down this hall, ‘listen’ to the marching band playing for you like you just scored the winning touchdown.  You’ve done it Paul.”

Today we have the internet, so now celebrations are a lot more visual.  Pictures on-line  with people holding signs saying “I kicked cancer’s ass” or “Remission April 12, 2012”.  It seems that several hospitals and chemo wards have a bell mounted to a wall that gets rung as you walk out for the last time.

That feeling unfortunately does not last.  Soon after, you look at your calendar and realize that you have a follow up visit scheduled with your oncologist in just three months.  Of course, as a survivor officially, I wished it could have been just a bit longer of a down period to soak of my achievement.  But there was a plan, and it was followed and it worked.  And if that was not bad enough, it was not long before thoughts of the cancer coming back came into my head, and stayed for a long time.

My follow up appointments got longer between visits to four months, then five months, and by the second year in remission, I was being switched to every six months.  At four years, I got to go to annual visits.  But the fear of recurrence still hovered over me.  But by this time, I actually was beginning to think of being done with cancer.  Applied for health and life insurance, told to call back when I hit the five year remission mark.  Turned down for a job because I needed to be in remission longer (another post).  So, there it was, the end of my cancer journy, five years in the making.  Boldly, I called it “the cure mark”.  At five years I would make everyone happy I was done with cancer, most importantly me.  There would be no more discriminating against me.  I would be able to buy insurance again.  I could apply for any job I wanted.  Even better, my oncologist forgot to send me a reminder card for my follow-up appointment.

Now as you follow my blog, you will see a pattern.  I have a habit of acting out “as long as no one notices, and I am not feeling toooooo bad, nothing needs to be said or done”.  And that is exactly what I did, nothing.  The following year, still no reminder card and so on.  Of course, the responsible thing would have been to contact the oncologist myself.  I knew that I was supposed to have the follow-up appointment.  But I soon realized, I was no longer dealing with cancer.  I had finally done it.  No more cancer.  No more fear of recurrence.  And that is the way that it went for twelve more years.  I went back to seeing my family physician only once a year as needed for a season allergy shot.

In April of 2008, the 16th to be exact, I learned a frightening truth.  I was not done with cancer.  No, my Hoddgkin’s Disease had not come back, but over time an unrealized side effect had developed.  The main left artery going to my heart was so badly damaged, that during my appointment just for testing, I was not going to be allowed to go home.  It was that bad  (You can see the whole story by reading “CABbaGe – Not Just A Green Leafy Vegetable” which the link can be found at the top of the blog page).  But I did convince the doctor to allow me to go home to get my affairs in order.  For whatever reason, I began to sing to every tech, nurse, and doctor that came near me, “I had Hodgkin’s Disease.  I went through radiation therapy.  I went through chemotherapy.  I have no spleen.”  It was like a recording being played over and over again.

Prior to my heart surgery, I had already been involved with other long term cancer survivors.  So I knew what the news of my heart surgery would mean.  All the people that I empathized with were now going to be my support and guides through whatever would come my way.  I needed to find someone who would have knowledge and experience with long term cancer survivors and late effects.  I found perhaps the best doctor not just in the country but in the world who has spent decades researching Hodgkin’s Disease and late cancer treatment effects.

And that is how my first visit with him would begin, learning about what they have learned about not just my treatments, but those who came before me, and those that came after me.  I was told of the new protocol and the importance of following cancer patients when they were done with treatments as it is better to recognize any side effects like secondary cancers or other maladies.  I am just one of millions of long term cancer survivors alive decades after their treatments ended.  And if this encourages you, then know that I have met many other survivors who have beaten cancer twice as long as I have.

It is one thing to be told we are in remission.  It is another to be told that we have beaten cancer.  But most of us were not prepared that we would have to continue our care, even if just follow up visits, for the rest of our lives.  Please be sure, I know what it means to be have beaten my cancer.  I know how toxic the treatments were.  Emotionally, I survived but most recently deal with physical maladies and something called Survivor Guilt.  If I could tell my oncologist one thing that I wish he would have told me, is that I would never be done with cancer.

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4 thoughts on “Never Done With Cancer

  1. Patricia Pietrobono on said:

    Wow. I am a mother of a recent Cancer Survivor and this post brings up all those crazy clouds of “what if” in my mind. However, I’m a firm believer that the process of years of Cancer research have made things a lot better moving forward and hopefully my son will never face these issues in his lifetime. I too have written a book on his battle and hold strong to the words I wrote and the lessons we learned. Best of luck and look forward to your novel.

    • Congratulations to your son and true wishes for a long life in remission. Long before I had to deal with these late effects, I felt as you did, about the “what ifs”. I was contacted by so many after I wrote this post, that the new post that I am working on actually addresses the progress. Even in general face to face conversations, people have a tendency to get uncomfortable when they find out what I am dealing with, as they know someone going through cancer. But the truth is, even in my short time, there has been so much progress in diagnostics, treatments, side effects, and longevity there really has been many improvements. The most noticeable are the follow-up visits. There is a good chance, had I been more closely followed up, issues could have been dealt with much sooner than becoming an emergency. Thank you for your comment. I do appreciate it.

  2. Paul, the first part of this could be a mirror of my own cancer journey – the after treatment visits, the fear of recurrence, and finally the hiding and not wanting to think of it. I’ve been very fortunate in that my valve problems are not bad enough for surgery, but yes, eventually the late effects do come alone and force us to rethink our head in the sand attitude.

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