*Your Identity After Breast Cancer and Who Are You After Breast Cancer?

A few days ago, a dear friend asked if we could get together.  I rattled off 3 things I had planned this week since I have a little more energy as I work my way through this chemotherapy drug.  She responded that “I sounded like the old Denise.”  And she meant that in the kindest and most loving way.  This friend has been one of my best supporters.  Somehow it struck a cord with me.  Not a bad cord, just a cord.  It made me stop and think. The comments I had made did sound like the old me.  And so much of me wants to become the old me. I always liked who I was.  But I am a changed me since this breast cancer journey, and I don’t know what that really means.  I have to figure it out.

So I’ve been pondering that question since I am about mid-way through surgery, chemotherapy and radiation.  First of all, I thought about all the physical changes with my body.

1)   Since I had 14 lymph nodes removed and alot of nerves cut and damaged, I am totally numb under my arm, partially down my arm, and on the entire side of my bra line.  It is a large area to have no feeling.  When I spray my deodorant on, I feel absolutely nothing.  To shave under my arm, I have to use an electric razor because if I use a bladed razor I can easily cut myself and not feel it.  Just being numb on such a large part of my body feels very foreign and stange to me.  Certainly, I cannot say I am used to it.  I doubt I ever will be.

2)  Fortunately, I have not developed severe lymphedema, which is a swelling of the tissue down the arm and into the wrist because of lymph node removal.  The University of Michigan provided me with a class to help avoid lymphedema which was invaluable.  But lymphedema can develop now or 20 years from now.  To avoid lymphedema, every day of the rest my life it is mandatory for me to wear a compression bra 23 hours out of 24 hours.  It has become a second skin to me, however, I miss just being able to take off my bra for endless hours at a time.

Also, to avoid lymphedema I cannot lift heavy objects with my arm.  Plus, I cannot do things that need repetitive motion like any type of snow or garden shoveling, raking, and other garden activities.  Being an avid gardener, this causes me to be more creative.  When I airplane travel, it is necessary for me to wear a compression sleeve and wrist/hand gauntlet to avoid lymphedema throughout the flight and for 3 to 5 hours after the flight.  And it is necessary for me to take extra precautions to avoid insect bites, cuts, sunburn and infections, in that arm.

Perhaps the biggest precaution I must take is every night is I must elevate my arm above shoulder to sleep.  I must say, this takes a little bit of work and sometimes I roll over and just forget. When I have those “I forget” moments, I pay the next day by arm swelling.    About 90% of the time, I sleep on my couch so I can fling my arm over the back of the couch to keep it in place!      In addition to these things,  I must do exercises of this arm every day for the rest of my life.

3)   Fifteen percent of women diagnosed with Breast Cancer are Her2Neu positive which is an overexpression of a genetic protein in your breast cancer tumor markers. This type of Breast Cancer is far more aggressive with recurrence. Because I am Her2Neu positive, I will need intravenous infusions of Herceptin, a drug that was developed in recent history that cuts your chances of recurrence. That is the good news.  The bad news is I will need this drug for the next 1 to 5 years every three weeks, and as I said, I must receive it intravenously in a hospital setting.  The drug alone costs $50,000 per year.  I pray my insurance company covers the cost.  I’ve not had the courage to ask.

4)  When shopping for clothing, I always have to be conscious of clothing that detracts from my bust line rather than accentuates my bust line.  Is it too low cut, is it too transparent, or too lightweight. This is a whole new way of thinking because my whole life, since my breasts were my best feature, and I would always try to enhance this area.  Every morning when I get dressed, I have to always be aware of this fact.

4) Perhaps the biggest change is finding out what to eat.  My Breast Cancer is estrogen positive.  Hundreds of everyday food items including some fruits and vegetables, are estrogenic.  This is a huge NO for me as estrogen will feed my type of Breast Cancer and cause recurrence.  I am creating a list of what I can eat, and right now, it is very small.   Soy is the absolute worst offender.    I will write more on this Blog about the dangers of Soy, but suffice it to say that 70 to 80% of all foods in the grocery store contain soy.   Obviously, this is astronomical.  Increased estrogen not only feeds many Breast Cancers but many other cancers, a fact that should concern all of us.

5)  Missing a breast is last but certainly not least in the list of changes to my physical body.  I still have a little boob, “boobette” as I call it.  It is far more tissue than I thought I would have, so I am grateful for that, however, everytime I look at my major body changes, I have to think about reconstructive surgery and then nipple reconstruction, which are two separate surgeries.  Breast cancer survivors call them their “foobs” and “fipples”.  That always makes me laugh!  I am not ready to even think about 2 more surgeries.  So I just put on my prettiest bra with my prothesis and forget it.  Well, I never forget it, but I try.  It has taken alot of emotional work, but I realize missing my breast does not define who I am.

Well, these are the physical changes I have been forced to make over the last 4 months.  It takes up alot of space in my head to remember them!     Old Denise didn’t have to think about these things.   New Denise does.  That helps me understand New Denise a little better than before I wrote this.

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2 comments

  1. I am so moved by this post, you are an incredible woman with a gift for writing from the heart and helping all of us better understand your journey. It’s going to take a bit of time to truly process this, but I can’t thank you enough for sharing this.

    I love you,
    Connie

  2. Great post. New Denise is a strong lady indeed. I tried to imagine what it would be like for me to wear that compression garment and elevating my arm while I sleep and I would be so irritable if I had to do that. Goodness. I don’t know how you do it.

    Blessings.

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