Friday, November 30, 2012


I've had 4 different cancers.  All 4 have left many scars on my body and mind.  Hodgkins Disease, Breast Cancer, Basal Cell Carcinoma, Squamous Cell Carcinoma.

The most difficult for me, have been the Hodgkins Disease and Breast Cancer.  

Just the word cancer being associated with the word breast, sounds like it would be ugly.  It is.  I had a double mastectomy.  I'm reminded of it everyday I get dressed or look in the mirror.  

The Hodgkins & BC radiation treatments left behind internal scarring, resulting in constant nerve pain, loss of muscle, and loss of functionality of right fingers/hand/arm.  Nerve pain is a form of harassment - it doesn't ever go away. Ever.  Heart damage from both chemo and radiation causes fatigue. Walking, maintaining balance, and being coordinated are skills I no longer have due to neck, spine and peripheral nerve damage caused by radiation and chemo.  The more time that passes, the weaker my muscles become, and the more difficult it is to get around.  Anything further than walking across a parking lot now requires a cane, pushing a cart, pushed in a wheelchair, or driving a motorized scooter. Getting comfortable in my own home, or bed is difficult. Going out for any long periods of time can be exhausting. But, I do love and enjoy going to events, vacationing, and parties!  Timing of these events, resting before, after, and during, is important to longevity, and something I need to do. Always admitting I need to do that, not always my best trait. Having a loving, caring, understanding life partner who knows I need that, priceless. Friends and family who understand it, precious.

Prior to my mastectomy surgery, I turned on my laptop and typed into Google search "mastectomy pictures".  What does it look like?  With reconstruction? Without?  How do they do the reconstruction?  When? The pictures were frightening, but truly represented. I also searched for reconstruction images.  Some frightening, some not bad.  Of course the Internet was filled with info... Both pro and con on reconstruction.  You would think my surgeon or oncologist would have provided this kind of info.  They didn't.

So I went into this mastectomy surgery scared.  Unsure.  All I knew was, I have stage IIIa Breast Cancer, and my first focus is to live.  I knew I had to sacrifice my breasts for my life.  I finally decided, no reconstruction.  Why?  My logic included knowledge of upcoming harsh chemo and radiation treatments.  Additional surgeries was not my desire at the moment.   Plus I wanted to be able to see and feel any recurrences or problems that may occur in the future without something between skin and chest.  Although I felt my logic was sound, I questioned that decision as a woman.  With or without boobs, I'm still a woman.  Same as if I had Ovarian Cancer, and had my ovaries surgically removed - I'd still be a woman.  So tits shouldn't define this woman.  And I don't really need tits anyway, do I?  No more uncomfortable bras, that you can't wait to get home and take off.  No rolling over on them in bed and moving them around to get comfortable.  Or worse yet, your bed partner rolling over and pinching them in the night, or a dog/cat jumping onto your chest.  Boobs just got in the way sometimes.  But still, there they are, distinguishing features of a woman.  No ovaries?  Not something you would know simply by looking at a woman walking by, or sitting on a patio, giving a hug to, or going into a pool.  No boobs?  Quite noticeable on all counts.

Indeed it was my decision to go down the road without reconstruction.  That decision comes with ramifications.  To others, outside of my family and friends, I appear differently odd.  I often find those others staring at me.  Not the kind of stare because I look like someone famous and they want to touch me or get an autograph........   I can read their thoughts by the type of stare.  There's the subtle stare 'That is a woman, so surely she would have some breasts, no matter how small'.  There's the confused stare 'Is that a woman, or a man?'.  Then there are the multiple-whisper-down-the-lane stares from one whispering to another 'Is that a woman changing to a man, or a man changing to a woman' followed by snickering.  There are also some very hateful kind of stares.... I'm not sure exactly what they may be thinking, and it's probably better I don't.  When I see that kind of stare, I know what I'm thinking - 'F you, you shallow, superficial, ignorant prick'.  Our physical appearance is often the only way we are judged, as these people may never have a chance to know us.  Therefore, they look, and assume this was a desire to appear different.  I will add, that I am tall, short haired, very little jewelry worn if any, no makeup, and I wear loose fitting shirts.  When I go swimming, I wear swim shorts, and a loose fitting sleeveless rash guard shirt.  When I get out of the water, I am extremely self conscious, constantly pulling that shirt away from clinging to my chest.  So many times, I catch strangers sneering and looking as if disgusted.   That cuts like a knife.  It hurts, even though I know they are ignorant. I know I shouldn't care, but I do.  Wouldn't you?   I often thought I should tattoo my chest with "Sacrificed Breasts for Life".  That way when I get the hateful hurtful stare, I can lift my shirt and show them why.

I realize this will be a part of my life going forward - my choice.  When I'm alone, I will recall those stares from faces I don't know. Humans.  Only humans do this to each other.  When my dogs and cats stare at me its because they love me no matter how I look.  Or maybe its because they want something to eat.  Its definitely one or the other. :)

And-oh-by-the-way..... I actually tried the breast prosthesis..... not desirable on my part.... they were heavy, hot, they shifted whenever they felt like it as if they had someplace to go, and the bra seemed more uncomfortable than ever before.  Oh hell to the no, that wasn't gonna work for me.  I packed them up and donated them to Gilda's Club.  I hope they are out there living happily ever after with someone who appreciates them.   I wish them no harm, I just knew they had to go.  

There are laws protecting Breast Cancer patients.  Whereby, they can decide to have reconstruction at any time.  There is no limit on the amount of time passed since the mastectomy. Insurance must provide coverage for  reconstruction, if so chosen.  The insurance must also provide coverage for prosthesis.   That's a wonderful law.  We need many more like it going forward.  That's why I keep involved with cancer advocate groups and survivor friends. Voicing about my life experience.  Learning how to survive - moving forward, paying forward.  

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