*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.

*You can’t hurry your progress during Chemotherapy

I’ve noticed a theme lately as I work my way through Chemotherapy.  I now have 8 weeks to go through a 5 month regimen of chemo.  The end is in sight.  I am starting to feel better, look better, and my hair is a quarter inch long.   My coloring is better and my new blonde wig looks close to my previous hair!  People are starting to admit to me how bad I looked a few months ago.  I laugh and thank them for their truth.  All I had to do was look in the mirror when I felt like hell.  Never did I believe all the “you look great” comments.  But now as I look in the mirror, I see my old self and a new spark coming back.

Friends and family are tired of my being sick.  First they thought I was going to die.  I didn’t, I’m still here.  Lately, I feel like I am being pushed to be better than I am.    I just had a friend ask me what I had planned over the weekend.  I said, whoa, I’m not that good yet to have weekend plans!  Slow down.  They just want me normal again.  But you know, even though it is nice to see snippets of the old Denise, everything is different in my world.  I think it will remain that way as I have learned so much on this journey.  There is a new normal, and I don’t know what that normal is as yet or who that new Denise will be.

Right now, I am happy to take things slowly. This week I drove to the grocery store and went shopping alone for the first time in 4 months.  The librarians hugged me as I visited the library for the first time in 5 months.  Those were major things for me this week.  But those are very small steps. And I know I must continue to make these small steps.

As my hair grows in, so does my new normal become revealed.  It is a process.   One thing I have learned on this journey, is to listen to my body.  So I am.  Oh, I still remember what it felt like to be unable to get off the couch for weeks at a time.  It is still a very vivid memory, so that slows me down and makes me listen.  How do I really feel?

So, I will listen to where others think I should be, but be true to myself and continue on the slow road to healing with much gratitude along the way.  Last autumn, I didn’t think I would be here in the Spring.  Every day is a great bonus to me.

Where is God during Breast Cancer and Chemotherapy?

I must admit many times I’ve wondered, “Where is God?” during my breast cancer and breast cancer treatment.  Tough times in life always bring up this question.   Or it should.  It is good to ask the question.  God can handle it.

If you asked most anyone if Denise is a religious person, the answer would be “Yes.”  I’ve done the right things.  Gone to church every Sunday my entire life, belonged to prayer groups, prayed on a daily basis, engaged in religious conversations, read so many religious books it would fill a library, and tried to be a good example to my friends.  So just because I can operate under the term “religious”, what does that really mean?

While I am making admissions, I can say I’ve always been a good judge too.  Sometimes not in a good way.  I worked in the Court System for 15 years and my immediate boss was a Municipal Court Judge.  I was paid to judge.  So I have always struggled with my learned behaviors and judging others at first glance.

Really surprising for me was that some of the most insensitive things said to me during my Breast Cancer journey have been leveled at me by the really “religious” of the world.  And some of the kindest things done for me have been done for me by the non-religious.  Oh my, I’ve had to rethink and relearn some of my personal judgments from the past.

One think I have learned is that God sends people to love me when I need them the most sometimes in totally unexpected and surprising ways.  The Muslim Medical Assistant at the Chemo Infusion area that is so kind to me and helps me every week to be in a quiet part of the infusion area, the 30 something African-American male that is always so upbeat and friendly to me at the University of Michigan Cancer Center who suggested I discover the “secret” back way of the hospital so I can take a walk outside to lift my spirits.  I recently learned he is a cancer survivor.  An old high school friend who took the time to come and visit me as she lives 120 miles away.   After we caught up on life, I understood why she is so compassionate and understanding from things she has been through on her life’s journey.

When I was a Second Grader, the Baltimore Catechism was being taught at my Catholic Catechism Class.  I remember the question, “Where is God?”    The answer, “God is Everywhere.”   Too bad it has taken me all these years to really learn the answer to that question.




Expending energy wisely during Chemotherapy and Breast Cancer

I have learned so much on this Breast Cancer journey.  One of the most important things I have learned that hopefully I will take to my future is the expending of energy.  Since I have had so little energy during Chemotherapy, I have learned to be extremely careful where I spend those precious reserves.  Now that I am getting slightly more energetic, it is even more critical!

Always having been a fairly energetic person, I never really thought twice about where I was expending my energy.  If I wanted to run to the grocery store every day, I did.  If someone asked me to a social function, I said yes.  If I wanted to take a drive just to waste time, I would. Now, since I have to really, really think if I have enough energy to get into the car, drive to the grocery store, walk from the parking lot clear to the back of the store, often times I just know I don’t have enough energy to do it.  As a result, I do without, use something else, or ask for help.  And I never realized how much energy driving takes!  Being single, I drive almost everywhere.  Never really spent that much time thinking about it.  Now, I don’t have the energy to drive far and realize how draining it is!

So what have I learned for my future?   So many “things” I did or “places I went” took alot of energy that I could have spent in a more productive way.  Maybe if I hadn’t been so busy going to the grocery store, I could have found a cure for cancer.

Well, that might be a stretch, but you get the idea.  Energy is a precious gift.  I pray as my surviving cancer continues, I will protect my energy and expend it wisely.

Breast Cancer is a Crazy, Lonely Roller Coaster Ride

http://www.youtube.com/watch?v=vD9K3PqGE9k  – BEST VIDEO describing breast cancer journey…

As I begin to see light at the end of this very long tunnel – 10 more chemo treatments to go, all kinds of things flash through my mind.  One thing I remember so vividly is my driving to the University of Michigan Hospital back on November 5, 2011 for my MRI.  I wanted to go alone as I needed time to myself to think about everything that was coming at me.  The bone scan showed several hot spots and Oncologist was concerned cancer had spread to my brain, spine and leg.  On the drive up, all I could do was picture myself on the Top Thrill Dragster, the fastest roller coaster in the world at Cedar Point Amusement Park in Sandusky, Ohio.  I don’t do roller coasters, but I knew I was on one and wouldn’t be able to get off.  The roller coaster images have stayed with me on my journey.

Today, my acquaintaince turned friend, Kathy, who has Inflammatory Breast Cancer and was diagnosed 2 months before I was, sent me this video done by a breast cancer survivor, entitled “The Wildest Ride on Earth.”  I sobbed as I watched it.  Our life circumstances are different, but the emotions, isolation, feelings, and being trapped on that roller coaster say it all.  The images, the music, the fighting for your life, looking like death, feeling like death, and then starting to come back to life, and the tremendous fear you might have to do it all again.  It all resonates with me.

It is so moving and describes my journey and every other woman’s journey who is battling breast cancer. Please watch it!   http://www.youtube.com/watch?v=vD9K3PqGE9k

Breast Cancer, Chemotherapy, Friends, Relationships, Anger and Loss

From the minute you are diagnosed with Breast Cancer or any type of cancer, a huge shift happens within your relationships.   The overwhelming majority of your family and friends run immediately toward you and stay there with you the entire time of your surgery and treatment.  But a few run for the hills never to return.

Let’s start with by far the majority which are those family and friends who have run toward me.  I have been shocked and amazed by their love, encouragement, cards, visits, flowers, gifts, rides to treatment, timely telephone calls, vigilant emails, eloquent and caring letters, professions of love and caring, gifts of food, prayers, Masses, saying Novenas for me, physically assisting me post-surgery, offers to go to grocery store, taking me to the grocery store, and overall outpouring of support and love.  Not one of them has said, “call me if you need anything” and walk away.  Instinctively, they have just done it.  An old and cherished friend calls me at least 3 times per week and asks what she can do for me.  If I can’t think of anything, she always just does something!   It is unbelievable to me!  One friend who has driven me 120 miles round trip to treatment on many occasions told me since we couldn’t take our walks in the park anymore, this was the next best thing since we had time together!   Some things I have found unsolicited in my door -muffins, cookies, casseroles, vegetarian dishes, banana bread, daffodils, and magazines.   I haven’t had to call or ask.  It has humbled me and given me reason to live.  I try and stay focused on these friends and relationships because it really helps my healing!   And I now know how much they care about me!   Their actions spoke loudly and clearly.

I’ve also learned that greeting cards are not a thing of the past.    One friend I’ve talked about has sent me a card every week for since diagnosis, and she continues much to my delight!  Plus, I’ve had over a dozen people send me 4 to 10 greeting cards each – funny, serious, you name it.   I have had over 250 total cards sent to me by friends, relatives, and strangers!  They always lift my spirits, and I have appreciated the effort that has gone into each and every card.

Then I had some renewed friends run toward me.  Friends that were just acquaintances before or friends who have been out of my world for sometime, but suddenly, they have been there for me in ways I could have never imagined.  I have found that these “renewed friends” are people who have been through an awful lot in their own lives, know what it is like, and step up to help you.  These renewed friends are great gifts.   One “renewed friend” from high school sent me a great artistic placque with a butterfly and on its body it said, “Hello Courage”.   It summed up exactly what I needed on the day it arrived.  I knew she had been through alot in her life as her instincts were so in tuned to someone in need.    I truly will never forget the day I opened it as it was so timely in its arrival.  And another renewed friend that I’ve known almost my entire life, has visited me on four occasions, brought me the most thoughtful gifts, and given me the best medical, cancer and surgical advice I’ve gotten from anyone.  She has been through surgery several times, didn’t have alot of support, knew how isolating that felt, and extended her support to me.

Then there was an acquaintance who is now a friend.  She was diagnosed with Breast Cancer very close to the time I was diagnosed.  She has been an enormous gift to me as she is always one step ahead of me giving me strength, encouragement and cheering me on!

I know I will never forget each and every kindness, act of love and charity that has been bestowed upon me.  It has touched  my heart and soul, has helped heal me, and added years to my life.   I am eternally grateful for the people God sent to love me.  I hope and pray I will never again say casually to someone, “call me if you need me” but simply do something for them in their hour of need.

So now we have to address the few who run for the hills never to return.  The biggest thing I have learned are these relationships are a painful but a necessary loss.   The more I am able to think about it in an objective fashion without hurt and anger, I realize it is precisely these relationships that were draining me and not life giving anyway.  Cancer just brought clairity to these relationships.   If I am really honest with myself, I was doing the majority of the giving.     I was being used in feeding their needs, but they had no desire to reciprocate.  The relationships were not healthy ones.  But it still hurts, and it still causes much anger and resentment.

So how do I move past this?   Well, I haven’t gotten to this point yet, but I definitely need to speak the fact that their “running for the hills” hurt me.   I don’t have any room in my life for the hill runners, and there are more than one, but I have a desire to speak the truth to them with love.    I need to address it with them in a healthy way for me, cut the ties, and end the pattern of the relationship.  I need to say directly:  “I felt totally unsupported by you during the worst time of my life.  It deeply hurt me and caused me great pain and anguish.”   If they make excuses, I will have the facts to support my claim.   But I am not going to expend alot of energy with them or turn it into a big drama session.   They chose to speak their truth to me by their choices.

I was particularly sensitive to these hurtful relationships during Adriamyacin Chemotherapy as I felt so needy and was so sick.   It also taught me that when you have so little energy to give, it is far easier to see where you were giving your energy in unhealthy ways before diagnosis.   I don’t want to do this any longer.

So I am trying to celebrate the old friends who were there for me in huge ways, the new and renewed friends I have made, and even celebrate the lost friends because those relationships weren’t healthy for me anyway.  I believe I have worked through the anger and will come out of this much healthier than when I went into it physically, spiritually, and emotionally.