Paul's Heart

Life As A Dad, And A Survivor

The Classes Of Survivorship

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As an advocate of cancer patients and survivors, I have met so many people over the years who have beaten cancer and moved on with their lives with only having to deal with follow-up visits.  But there are also many people that I have met who have had to deal with late developing side effects from the treatments that saved their lives, only to struggle with these new physiological issues.  Sadly, whether because of ignorance of medicine to recognize these health issues, or the body simply not able to handle any more trauma, survivors who have come into my life, pass away.

It does not get any easier, as yet another survivor dies.  It does not matter the circumstances.  In dealing with my own late term survivor issues, with the announcement of a fellow survivor passing away, it is a brutal reminder just how delicate not only my life is, but as I am certain, my fellow survivors will echo the same.

For those who are fortunate enough to not only have never dealt with survivorship issues, or even a cancer diagnosis, it is impossible for you to truly grasp that we cannot “just move on” with our lives.  But as I mourn yet another survivor, and how she lived her life, I began to think about the topic of this post.  Just as there is staging in a cancer diagnosis, if it has not been done yet, then I think survivorship should be staged, or classified as well.

The first classification I would give, would be to those who finish their treatments, and other than their follow up appointments, which coincidently will continue for the rest of their lives thanks to survivors like me who proved that surveillance must be done to stay ahead of any developing late side effects, will get to go on through the rest of their lives without a care in the world.  Their magical 5 year mark will come and go.  For the majority of patients, according to statistics provided by various resources, they will not have to deal with any late side effects because they do not have any.

The next classification of survivors are those who are done with treatments, continue to be followed up, but as time goes on, develop health issues that cannot be explained.  Mysterious maladies and complaints that cannot be diagnosed simply because the experience and education of the treating physician just is not current.  The medical professionals unaware of, or worse yet, unwilling to recognize the late developing side effects from diagnostic procedures, and chemo and radiation therapies, leave patients frustrated, scared, and hopeless.  Many of these patients succumb to a treatment related side effect, and no one ever suspected or diagnosed it.  They also do not even live near or have access to the limited cancer survivorship clinics that specialize in dealing with late effects.

I would place myself in the third classification.  I am aware of my late issues of which I have many.  Although I currently do not have access to my doctors, when I am able to see them, I am subjected to annual testing and procedures to see how far my irreversible and progressive issues have gotten.  But as I  found out with my emergency heart surgery, without awareness and being a strong self-advocate, I would be dead.  But this has been a Pandora’s Box because with the knowledge of my late effect issues (cardiac, pulmonary, muscular, spinal, gastrointestinal, endocrine, urinary, immunological… there are more but you get my point), I cannot turn off the concerns for my mortality.  Because of the increased risks, most of my issues can only be managed, meaning, I have to tolerate the pains, the discomforts, and do my best to prevent the inevitable.  Oh and yes, it is managed only until the issues become bad enough that the risks of correcting are less than the risk of the progression of the issue.  To give you an example, my carotids are fried from radiation damage.  But the risk of correcting them, are too high of a stroke.  Therefore, I have to wait until they are constricted enough that a stroke is risked, only then will surgery be considered.  This is how I go through my life every day, knowing that I have all these issues, and some day, just as with my heart (and other incidents), I will have another issue that has to be dealt with, and hopefully it will be done in time.

The last classification would be of my fellow survivors whose bodies have gone through so much trauma, more than 3 times the surgeries, secondary cancers, health issues.  It is hard enough to believe all of the things that I have to deal with.  But I know of survivors who have survived longer than me, and were treated with much more harsh treatments than me.  And today, their bodies have all but given out.  There are not many options.  They are finally at the crossroads as I mentioned in the last paragraph, the risk of correction is less than the risk of the eventual fatal event.  I know so many people who are in this position right now.  And I often scratch my head wondering why so many continue to fight on.  But they do.  And they continue to experience memories that they never thought they would see.  And even more amazingly, the often offer support to others in need, never revealing just how sick they truly are.

But it happens several times a year in my life, a survivor in this stage, can take no more.  I want to be clear, they have not given up.  Their bodies just cannot take anymore.  And it happened again just recently.  And it does not get any easier to accept.  But there definitely is no way to “just get over it.”

 

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9 thoughts on “The Classes Of Survivorship

  1. Agreed. Seeing a therapist has helped me deal. Not sure I’ll ever be completely “over it”.

  2. Paul,

    Thank you for writing this relevant and heart-rendering post.

    I see survivorship journey in the text.

    Brothers in arms,

    Glen

  3. Debi Miller on said:

    Agree completely. It never really leaves your mind. Thank you for your thoughtful posts.

  4. While I feel like I am currently in the same class as you, I know that I will eventually fall into the last classification. I know that both of us are fighting as hard as we can to remain in our current class for as long as possible!!! I do so wish that our “non-cancer” friends could understand…and even those who are in the first class. I wish I could stop talking about cancer! I wish that all of the health issues would be heavenly healed and that our entire family could go on with our lives as they were pre-cancer! Until then, like you, I will continue to fight and try to help educate those who will listen. Thanks for your willingness to share, Paul! You are a treasure!

  5. Beautifully written-thanks for writing. I like how you classified the groups of survivors. I loved how you wrote this, “And even more amazingly, they often offer support to others in need, never revealing just how sick they truly are’. This is so true!!!!

  6. Corinne Gerhart, DO on said:

    Thank you Paul for your support and kind words regarding my sister Lisa. I have watched her struggle over the years to educate her physicians regarding the many complex issues that stem from her treatment of Hodgkin’s Disease in 1978. Her life has had incredible influence on mine and taught me the majority of my medical knowledge. I became a Palliative physician so that I can continue to use the knowledge that we learned from her experiences to help others. I am very sad that she has passed on, yet am relieved she is finally no longer suffering. You are correct- she didn’t give up- there simply does come a time when a body can no longer take any more treatments. Her will to live long exceeded her body’s ability to endure. She greatly appreciated the support and understanding that only those of you in the survivor group could provide. Keep pressing on. I will also continue to advocate for you all with my medical colleagues- much education and work remains to be done in order to provide better care for those suffering from the effects of cancer treatment.

    • Corrine, I only knew your sister briefly through her survival and these words were based on the short time I knew her. I can only imagine the difference in my post had I known her longer.
      Bless you for choosing the path that you have not just in Lisa’s legacy, but so that you can help others who definitely need your help.
      Please feel free to keep in contact with me as I have been at this myself for over 25 years.

      • As I am going through her things, I am finding the many articles and hand written things she has from her own research on this topic. We spoke of this many times over the years, but to see it all in boxes, left for me to compile and decide how best to use this resource, I stand amazed at all she has been through and how strong she was right up to the end. I would very much like to stay in contact, continue to learn from you all and see how, when and in what way her story can be used to help others. She always wanted to write a book, then had difficulty with her vision and voice in recent months and was unable to do so. Hopefully it will become clear what we can do to keep her story alive.

      • Corrine, if there is any way that I or any other of my felliw survivors can help, please ask.

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