Sacrifice

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.  

Radiation Induced Brachial Plexopathy - RIBP WHAT IS THAT???

Most have never heard of it.  Nor had I until 2010.  As I searched for answers to physical problems I was having, I found a shoulder surgeon who understood.  He scheduled an MRI to rule out any tumors or shoulder tears.  I had neither.  However, he told me I had Radiation Induced Brachial Plexopathy caused by the mantle radiation treatment I received in 1983.  WHAAAATT??  It’s 2010!!  I had a few further EMG tests to confirm.  He understood, what several other MDs could not.  The surgeon told me that there is nothing that can be done to correct this damage.  And surgery could be more dangerous, as scarred radiation tissue is difficult to heal.

Previous to the shoulder surgeon, I had already been to my PCP several times.  He shrugged his shoulders. Gave me a couple steroid injections, that did nothing.  Talked with my ONC multiple times about it.  She shrugged her shoulders.  And as I thought back on it, my problems began to surface when I was about 10 days into my Breast Cancer rads in 2006.  At that time, I brought it to the attention of my Radiologist.  She didn’t know why I was having these symptoms.  She most definitely should have.

Radiation-Induced Brachial Plexopathy (RIBP) is caused by radiation damage to the brachial plexus, a bundle of nerves located near the neck and shoulder. These nerves are responsible for the sensory and muscular sensation of the entire upper extremity. As the feed to the nerves die, so do the nerves.  Nerves feed muscle.  Muscles die without food.  This damage, in my case, was originally caused by mantle radiation received for treatment of Hodgkins Disease in the early 80’s.  Collateral damage on the path to kill cancer cells. This old type of rad treatment has since been changed.  However, with survivors living longer we are seeing and feeling late-effect issues from these extreme rads. One of them is Breast Cancer. Hence my diagnosis in 2005, 22 years after the mantle radiation.  The additional radiation I received in 2006 for the Breast Cancer overlapped the area of the right Brachial Plexus, thus giving it fuel for more damage.  As noted above, neither my ONC or Rad MDs knew anything about this in ‘06, ‘07, ‘08, ‘09, nor ‘10, when I would bring up my increasingly worsening symptoms.  Hhhhhhmmmmmmmmmmm.

So, off I went into the world of the internet.  Filtering through those who want to capitalize on our pain with supplements, vitamins and expensive roots, tree bark, snake oil, was tiring and frustrating. I began writing in various forums on the Breast Cancer sites.  I found that I was not alone with my symptoms, problems, and pain.  Hey - I’m actually not the only one!  That isn’t something I would want for others.... but to know it’s not just me, and the medical field cannot think I’m crazy anymore is kinda priceless, I must admit.  

In one of those forums, I read about a Dr at Memorial Sloan-Kettering Cancer Center who specifically sees Hodgkins Disease survivors with RIBP and other cancer treatment related problems.  I communicated with him, and made arrangements to travel to NYC in August 2011.  I stayed 2 weeks.  Examinations and various EMG and MRI tests later, confirmed the RIBP diagnosis. Plus, the entire upper body is fusing scarred tissue called RIF (Radiation Induced Fibrosis).  I learned a lot from that trip.  It is not repairable.  It will continue to get worse.  Drugs may mask some of the pain and discomfort.  The more I use my hands and arms the more muscle loss occurs.  Same with neck, shoulders and back.  While I was there I spent  a lot of time with their PT and OT clinic.  They taught me good stretching, core strengthening, and relaxing techniques.  They also helped me with finding some tools to aide with the loss of right arm use.  The Dr told me the overall radiation damage to my entire upper extremity was the worst he had seen.  

It took 5 years to escalate to where I am today.  Five years ago I was wondering why I couldn’t control a pc mouse, or why my handwriting was looking bad, or why I kept dropping things, or why is it so hard to button shirts?  It was a combination of little, take for granted things, that grew worse and worse.  Gradually, I could feel, and see, my right hand waste away.

As of about 1 year ago, I can no longer use my dominant right hand. I am now totally, and only, left handed.  I dream left handed.  The pain enters my dreams when I sleep.

My RIBP life.... 24/7.... 100% of the time.... pain level 6-7 out of 10 normally... escalates to a level 9 often:

This is with my prescription drugs -

• right arm/forearm/hand/fingers severe neuralgia pain, sensitivity, clumsy and muscle atrophy - 5 lb measured grip strength, 0 finger strength
• left hand/fingers neuralgia pain, clumsy and muscle atrophy - 45 lb measured grip strength, limited finger strength
• back, shoulders, neck, weakened, limited movement.
• back, shoulders, neck, arms, severe neuralgia pain, muscle atrophy, and muscle spasms

Unless you’ve ever had nerve pain, it’s hard to grasp.  But imagine you grabbed a bare electrical wire, and never left go.  Yeah, like that.  Tingling, buzzing, stinging like angry bees, stabbing, jolting, intense pain.  That's with drugs.  Without is indescribable.

If you, or someone you know, has had radiation treatments for Hodgkins Disease 20+ years ago, and are having any neurologic problems, please reach out to your PCP.  And if they don’t listen, or shrug their shoulders without offering to figure out what is going on, then find a Dr that does.  Additionally, any lumps, bumps, changes in, or under, the skin seek medical attention. Breast Cancer is often common from mantle radiation, be alert, know your body!

I RUN FOR LIFE

Last week I went to a Melissa Etheridge concert.  Something I have done more times than I can remember.  I've seen her multiple times in PA, FL, and TX. I love Melissa's incredible song writing ability.  She is a great entertainer on stage.  Her performances are always enthusiastic, physically demanding, sung as loud and proud as ever!  Awesome.

After her own bout with Breast Cancer in October 2004, she was asked to write a song for Ford's "Race For The Cure" initiative.  She released "I Run for Life" on 10/04/05.  All net proceeds were donated with SGK getting 80%, and Dr Susan Love Research Foundation getting 20%.  There was a re-release in 2010, recorded with Chrystal Bowersox.  100% of the re-release net proceeds went to Breast Cancer Research Foundation.

Every time I hear it, and the strength it carries, I get a bit.... Verklempt.  Some of my friends know that, so it's also known as Cindy's crybaby song.  Biotches!

Here are the lyrics - and if you've never heard the song, go out on YouTube   http://youtu.be/Y1K5lWiNGmY

And yes..... I got a little moisture in my eyes when I watched it.


Written by Melissa Etheridge

I RUN FOR LIFE

It's been years since they told her about it
The darkness her body possessed
And the scars are still there in the mirror
Everyday that she gets herself dressed
Though the pain is miles and miles behind her
And the fear is now a docile beast
If you ask her why she is still running
She'll tell you it makes her complete

I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend I run for life

It's a blur since they told me about it
How the darkness had taken its toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
And now I'm still learning the lesson
To waken when I hear the call
And if you ask me why I am still running
I'll tell you I run for us all

I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend I run for life

And someday if they tell you about it
If the darkness knocks on your door
Remember her remember me
We will be running as we have before
Running for answers
Running for more

Gilda

Yesterday, I picked up on some disturbing news about Gilda's Club.  It requires me to rant....

For those who knew me back in the 70's when SNL was what you talked about all week long, quoting lines from the many hysterical characters Gilda played, will understand my total shock in hearing this news.

Let's start with who was Gilda Radner anyway?

Gilda Susan Radner - born 06/28/46, died 05/20/89 (ovarian cancer)

Gilda's comedic style was character driven, verbally and physically unique.  She was often compared to, and ranked up there, with Lucille Ball.  Some of her characters were Roseanne Roseannadana, Baba Wawa, Emily Litella, Lisa Loopner, Judy Miller.  These were my personal favorites.  Gilda shared her comedic talent with millions  every Saturday Night 1975 - 1980.  

In 1979, Gilda took to Broadway, her one-woman show "Gilda Radner - Live From NY".  It was also filmed, and released on video as Gilda Live! in 1980. 

In the mid 80's, she met and fell in love with Gene Wilder while filming a movie. They married in 1984.

October 1986, Gilda was diagnosed with ovarian cancer.  It took 10 months of tests and incorrect diagnoses until it was determined ovarian cancer.  Gilda endured powerful and painful chemotherapy and radiation treatments.  She went into a brief remission.  In 1989 her ovarian cancer returned.  While having a CAT scan, she was given a sedative.  She fell into a coma, and died 3 days later from ovarian cancer.

The Gilda Radner Ovarian Detection Center at Cedars-Sinai was established by Gene Wilder to screen high-risk candidates and run basic diagnostic tests.  Had the medical community been aware of Gilda's family history of ovarian cancer, and realized that women of particular decent (Ashkenazi Jewish) were of high risk, the possibility of catching Gilda's disease earlier could have resulted in a different outcome.  The awareness raised by Gilda's cancer, for early detection and familial connections, resulted in a registry - Gilda Radner Familial Ovarian Cancer Registry (GRFOCR).  This registry has resulted in earlier detection and longer lives.

Gilda's Club was established in 1991, by Gene Wilder, to provide a network of clubhouses across the US and Canada.  These clubhouses provided a meeting place for people affected by any cancer, and their families.  They could obtain information about their disease, learn how to live with cancer, and meet others with similar issues for strength and comfort.  Gilda and Gene had often spoken about the lack of community assistance for all cancers. There is a Gilda's Club here in the Dallas area where I live.  I have visited the center a few times, and donated various items for members in need.  It was a bright and cheerful facility.  Three years ago, Gilda's Club merged with The Wellness Community, and became the Cancer Support Community.  Somehow, this news escaped me.  I happened to drive by the Dallas Gilda's Club a couple weeks ago.  As always, I glanced at the building.  But this time, the familiar Gilda's Club name/logo was missing, and in its place was Cancer Support Community.  My neck nearly snapped off as I tried to stare and soak in this shocking new signage.  Then, yesterday, I saw a news posting about the renaming of all Gilda's Club facilities to this new Cancer Support Community.  WHAAAAAAAAT????  As I scanned various news reports, they all stated that the board of directors decided that the younger population didn't know who Gilda was.  So the decision to drop Gilda's Club from it's title was made.  WHAAAAAAAAAAT????  Really??  That is totally insane.  Gilda is this club.  This is a part of a woman's life history that should be taught and embraced.

Prior to Gilda's death, she wrote her autobiography "It's Always Something".  It included a good deal of her struggle with cancer.  I loved it..... but then again, I loved Gilda.

So, now, those of you who did not know Gilda Radner, know a little about her. Was that so hard to do Cancer Support Community?  

Shame on the board of directors for making a ludicrous uninformed decision to simply erase the name of a woman who was able to accomplish more in her shortened life than most can do given more time.  Shame on the board of directors for not keeping alive the history of the community centers by acknowledging her existence.  Shame on the board of directors for not keeping the humor and laughter brought to us by Gilda within the community centers. 

What better way to honor this woman than by adding a place where others can learn about her life and how she inspired Gilda's Club.  Reserve a space where cancer and the thoughts of cancer can disappear for a time, where they can watch Gilda in her profession of comic relief.  Play the SNL clips, Broadway show, and her various interviews regarding her diagnosis.  Post along the top of walls her quotes. Would any of that have been so hard to do?

This news of removing Gilda's name is deeply disturbing to me.  It's saddening.  It makes me incredibly angry.  It simply does not make sense.

Go out to the internet and search Gilda Radner - go to You Tube and watch the various clips - read her autobiography.  And when you do so, you can't help but smile.  

“While we have the gift of life, it seems to me that only tragedy is to allow part of us to die - whether it is our spirit, our creativity, or our glorious uniqueness.” 

― Gilda Radner