An Open Letter To My Doctor

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After many complications from my breast cancer surgeries from the past three years, I find myself left with no breasts and with chronic, sometimes debilitating pain that all stems back to one of the first surgeries I had.  I later discovered that this surgery which was done by the first doctor I saw, a general practitioner, was unnecessary and pretty much the cause of all my problems. Sometimes I go past her office and feel the urge to throw eggs at her sign.  Sometimes I just yell at her in my head, so I thought I would write a open letter to her to vent.  Let’s call her Dr. Black…

Dear Dr. Black,

You may not even remember me.  You have probably seen hundreds of patients since we met but I will never forget you. When we met you diagnosed me with invasive breast cancer.  I was a scared.   Hearing “You have cancer,” is scary. You said I needed to remove my lymph nodes so I said, “OK, do whatever you need to do.” I figured, you’re a doctor, you know what’s best.  I can trust you.  I didn’t know anything about sentinel lymph nodes, and I didn’t know what an axillary lymph node dissection was.  I just knew I had cancer and I wanted it out so I could get on with my life.

Remember a week after you took out my lymph nodes out when I came to you with my arm swollen with lymphatic fluid?  I never felt pain like that before but you assured me this was normal and everything would be ok. Remember when you came to see me in my hospital room after losing my left reconstructed breast? I wanted to hit you. As I wanted to scream “This is all your fault!” but I didn’t.

I lay here with multiple ice packs, finding it painful just to type this, over three years later, I can assure you that everything is not OK and it really never will be.  Oh sure, I have learned to live with excruciating pain.  I have learned to live without breasts but knowing that all this pain and suffering was unnecessary makes me mad.  I am not mad every day of my life, and I will not let anger and pain rule me but right now…

at

this

very

moment

I …. AM … MAD…

I want to throw things…

I want to scream…

Aviary Photo_130765685018189266Little things that we all take for granted are so hard for me right now.  I used to body build and took pride in being stronger than my little body appeared to be. I loved that I didn’t have to ask for help opening jars, doors, and lifting heavy things. Now whenever I try to seriously work out my chest and back swell up with fluid.  It feels like there is a knife stabbing me in my shoulder and I cry in pain.  Do you know that I cannot even open a can with a can opener all the way?  Since I don’t want to be “that girl” who asks all the boys in the house for help I try to do it myself and end up having to bend the half opened can back a bit of the top to remove the contents.  When I do this I have to be extra careful because if I get even a tiny cut on my left hand I am afraid it won’t heal. You know why?  Remember  that lymphatic system that you told me would re-route itself after you removed a third of my lymph nodes?  Well it never did!

Now, lets get to the superficial part of my problem. Besides all the pain, after my bilateral mastectomy my reconstruction failed not once, but twice! I had to go a year with no breasts because it was too painful to wear prosthetics. And you know what I do for a living? I am a brand ambassador/trade show model where looks are extremely important. The first time I had to do a job with no breasts I cried, comparing myself to what I used to be, and comparing myself to the other ladies I was working with. I used to get angry every time I saw anyone with amazing fake breasts thinking to myself, “Why did it work for them and not me?” But I got past that and learned how to alternate different prosthetics depending on how bad my pain and swelling is.  But the reality is I will never be able to reconstruct.   

So can you do me a favor? I think I deserve at least one, don’t you?  Next time you scare a patient half to death by telling them they have invasive breast cancer, you should check their sentinel lymph node and only if it is malignant suggest that they get an axillary lymph node dissection.  And please, before you do any of this, can you maybe take a few minutes to print out some information on exactly what all of this entails and what living without ⅓ of your lymph nodes can be like? I am not one to live in regret but I can’t help but wonder if things would have turned out different for me if I hadn’t listened to you.

Emily-Kate Niskey