Breast cancer
fact(ish) on Day Four of my second Pinktober of being a “cancer girl.” I
struggle with being called a “survivor.”
I know that I am one of the first of my peers to feel the personal pain of a wound drain. Feel the chemo in my veins. Shave my head. Have months of low white count. Of masks and hand sanitizer. Low hemoglobin and panting. Of radiation burns on my skin.
I know unfortunately I won’t be the last peer to be a “cancer girl”, but I am hopeful that treatment options advance more quickly than my friends / family age. That they won’t experience the carpet bombing of chemo. That targeted therapies allow them to live longer with fewer side effects.
This morning - I spent an hour talking to a friend who is a "survivor", recently out of treatment. I called him - he seemed down. His treatment recently ended. I told him it got harder for me when things got quiet. When you’re “in it” - you’re a “fighter” (though I agree the cancer vocab has got to change - that's how I felt). You’re actively doing things to kill the cancer.
When treatment stops. When it all gets quiet - you’re able to reflect ... You see the storm fading in the rearview, but you also see how close it got. The damage it caused. Stuff you didn’t notice when you were “in it”. You see your friends that didn’t make it through. And you’re worried another storm may be near.
You’re not sure quite how you made it. Not sure if you can weather another storm, but you can hear the tornado sirens in the distance. You know it could come back at any moment.
Then - despite the fear - at some point post-treatment - real life creeps back in. After so much rain - you’re not sure how you didn’t drown. But - you start to settle into your new norm. The kind that doesn’t involve 150 doctors’ appointments in a year. Where you’re not spending 10+ hours at “chemo days” anymore.
At first - after the storm - you were unflinching prioritizing living. “The dry cleaning can wait - let’s go for a walk.” Then, living almost becomes mundane again. You start to worry about normal stuff. Packed lunches. Laundry. ...Not that those tasks ever went away - they just got done through (a lot of help and) numbness - that it was getting done without really recognizing it happened.
And - you think you’re solid. You’re at a good place again where life feels normal.
But - a backache. A cough. A pain in the side...can all send you back to the scary part. The part where you have little control over what’s next and everything to lose.
So - you wait. There is nothing else to do. You.just.wait. You monitor your body. Spend a lot of time with Dr. Google. Asking the other "cancer girls" you now call friends. Call your onco if something hurts. No - wait - you need to see if you have the pain for two full weeks, then call is back if it still hurts. “Still hurts?” “Sounds abnormal.” “High risk of recurrence.” Get a scan. And you wait again - for results. You pray so hard it’s nothing. Sigh relief if it is nothing.
I guess I am lucky. With TNBC, I have a brighter fire (higher risk of recurrence) for a shorter time. After five years, my risk of recurrence drops to around 1-2%.
Until then - it’s wait / pray / wait.
...but - I struggle to call myself a “survivor” because I am still in the wait / pray / wait mode. Hopefully - I can settle into that word like I have settled into the mundane-ness of life. Like doing laundry. Until then - it’s I will hang out in here cancer limbo.
I know that I am one of the first of my peers to feel the personal pain of a wound drain. Feel the chemo in my veins. Shave my head. Have months of low white count. Of masks and hand sanitizer. Low hemoglobin and panting. Of radiation burns on my skin.
I know unfortunately I won’t be the last peer to be a “cancer girl”, but I am hopeful that treatment options advance more quickly than my friends / family age. That they won’t experience the carpet bombing of chemo. That targeted therapies allow them to live longer with fewer side effects.
This morning - I spent an hour talking to a friend who is a "survivor", recently out of treatment. I called him - he seemed down. His treatment recently ended. I told him it got harder for me when things got quiet. When you’re “in it” - you’re a “fighter” (though I agree the cancer vocab has got to change - that's how I felt). You’re actively doing things to kill the cancer.
When treatment stops. When it all gets quiet - you’re able to reflect ... You see the storm fading in the rearview, but you also see how close it got. The damage it caused. Stuff you didn’t notice when you were “in it”. You see your friends that didn’t make it through. And you’re worried another storm may be near.
You’re not sure quite how you made it. Not sure if you can weather another storm, but you can hear the tornado sirens in the distance. You know it could come back at any moment.
Then - despite the fear - at some point post-treatment - real life creeps back in. After so much rain - you’re not sure how you didn’t drown. But - you start to settle into your new norm. The kind that doesn’t involve 150 doctors’ appointments in a year. Where you’re not spending 10+ hours at “chemo days” anymore.
At first - after the storm - you were unflinching prioritizing living. “The dry cleaning can wait - let’s go for a walk.” Then, living almost becomes mundane again. You start to worry about normal stuff. Packed lunches. Laundry. ...Not that those tasks ever went away - they just got done through (a lot of help and) numbness - that it was getting done without really recognizing it happened.
And - you think you’re solid. You’re at a good place again where life feels normal.
But - a backache. A cough. A pain in the side...can all send you back to the scary part. The part where you have little control over what’s next and everything to lose.
So - you wait. There is nothing else to do. You.just.wait. You monitor your body. Spend a lot of time with Dr. Google. Asking the other "cancer girls" you now call friends. Call your onco if something hurts. No - wait - you need to see if you have the pain for two full weeks, then call is back if it still hurts. “Still hurts?” “Sounds abnormal.” “High risk of recurrence.” Get a scan. And you wait again - for results. You pray so hard it’s nothing. Sigh relief if it is nothing.
I guess I am lucky. With TNBC, I have a brighter fire (higher risk of recurrence) for a shorter time. After five years, my risk of recurrence drops to around 1-2%.
Until then - it’s wait / pray / wait.
...but - I struggle to call myself a “survivor” because I am still in the wait / pray / wait mode. Hopefully - I can settle into that word like I have settled into the mundane-ness of life. Like doing laundry. Until then - it’s I will hang out in here cancer limbo.
