I am two days late (as always), but Sunday was National Cancer Survivors’ Day.  Yay, I think.  I am definitely lucky.  I get to call myself a survivor.  My cancer held at stage 3 (meaning it didn’t spread to other parts of my body, despite being present in a large number of lymph nodes).  I have “no evidence of cancer”, known as NED.  Note that I don’t use the words remission or cancer-free.  They imply that I have beat this disease, and there is no indication that is the case.  I can have a local occurrence at any time, or a distant recurrence elsewhere in my body (known as metastasis).  I don’t get to feel complacent, but I do have hope that I will stay in this limbo for a long time, maybe forever.  As I said… I’m one of the lucky ones.


But I got to thinking about what it means to be a survivor.  I came across this picture this morning.  It was taken a few days after I finished radiation (four years ago today).  You can see the radiation burns across my collarbone.



Here is the thing.  That radiation burn was the tip of the iceberg.  I had burns covering the majority of that breast.  They hurt.  In some cases, they itched.  It was a full-time task keeping them slathered in a variety of ointments to control the pain and help them heal.  And they eventually did heal, although the scar tissue the burns left behind cause pain even today.  No one sees that, because for the most part that is all invisible.  The burn on my collarbone was the only hint to the world that I was suffering, for a few weeks at least.


And that is indicative of so much of my life now.  The long term effects of chemo and radiation, as well as the on-going side effects from hormone inhibition have only minimal noticeable effects.  You may notice I get tired easy.  You may see me limp, or wince when I stand up, or grimace when I bend or twist, or gingerly try to pop my knuckles.  You may not even see any of this.  But every joint in my body hurts.  I have days I can barely get out of bed.  But all you see is the tip of the iceberg.


I have struggled with anxiety and depression since treatment.  You may see me snap at someone (maybe even you).  I might seem quiet and concentrate hard on a task.  You may see me sit back and breathe carefully.  I might go off by myself for a few minutes.  What you don’t see is when I get home or go somewhere alone and have a meltdown.  The uncontrollable crying or just quietly rocking back and forth in a fetal position.  It’s the iceberg, you only saw the tip.


I am working on all of the above.  I have gone to therapy, I practice coping mechanisms, I experiment with different pain control to see what works best.  But I have accepted that there is probably no end to any of this.  All I can do is try to make sure that all anyone sees is the tip of the iceberg.  Not because I’m ashamed of anything that I experience, but because I need to maintain normalcy.  That means that sometimes I do the best I can until I can get to a place where I can take care of myself.


So the next time you notice something seems off with a cancer survivor friend, keep in mind that it may be the tip of the iceberg.  Ask what you can do to help in that moment.  And understand that they are doing the best that they can.


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