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Sheila's Story

10/4/2014

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Sheila had an early stage diagnosis in 2009.  She was 45 years old and confident that once she went through treatments and got breast cancer behind her, all would be well.  She went through her year of rough treatment and continued with her life, knowing that she “beat cancer.”   She was passionate about Habitat for Humanity and just as equally passionate about being fit and being physically active.  She played soccer every chance she got.

I’ll never forget the first time I met Sheila.  She came to the metastatic breast cancer support group I attend and she was absolutely terrified.  Four years and eight months after her last chemo, she was diagnosed with recurrent breast cancer in her bones.  She was not only terrified, but also furious.  She thought that once she reached that five year point of being cancer free, that she wouldn’t have to worry about cancer again.  She was livid that it recurred four months before that “magic deadline.”  She fretted that she did something wrong to make her cancer come back.  Over the course of time, however, she came to understand that there’s nothing magical about five years.  That several women in our group had recurrences 12 – 15 years after their early stage diagnoses.

She came to understand that there is no cure.  There’s merely “luck of the draw.”  She made peace with herself and the life she lived between the presence of cancer, but she remained angry at how little she knew.

Sheila’s primary cancer was hormone positive, but as it moved around her body and settled into her bones, it changed into what’s known as triple negative breast cancer.  Not only had it become triple negative, it became very aggressive.

Bone metastases are generally known as the “easiest” to treat.  The cancer isn’t in a vital organ, thus, the main danger is that of bones breaking and bone marrow/platelet production.  There are women who have lived extensive amounts of time with bone mets and Sheila hoped to be one of them. 

In her fear, Sheila stopped coming to our group for a while because there were two women who weren’t doing well and their conditions scared her even more.  She didn’t want to be like them.  She wanted to get better.

Unfortunately, the nature of her recurrent disease caused the cancer to march relentlessly forward. It moved behind her eye and into her brain.  She had full brain radiation that absolutely exhausted her.  Her bone mets spread even further, causing her incredible pain.  I reached out to Sheila because I didn’t want her to be alone.  Several of us in our mets group (all of us terminal patients ourselves) took turns picking her up to come to the group as she could no longer drive due to the side effects of the radiation behind her eye. 

The cancer continued on its path, with all treatments failing.  Sheila’s birthday was the same day as Bastille Day (France’s National Day) and she always wanted to go to Paris for the event.  This year, she made it happen – for her 50th birthday! I loaned her my lightweight travel wheelchair to help make the trip easier and she and her husband took off. 

She returned from France just before I left on a 16-day trip of my own.  We talked on the phone and she told me she had a great time, but that it was tiring and painful.  She left the wheelchair on her porch for me to pick up before I left and we made plans to get together after I got back.

That didn’t happen.  I got busy with getting the kids into school and with moving my in-laws next door to us.  I missed going to the support group for several weeks.  Imagine my shock, regret, dismay and grief when I was informed that Sheila died on Saturday, September 20.

Early detection didn’t save Sheila’s life.  It gave her a false promise that couldn’t be lived up to.  It infuriated her and she died knowing that the lie continues.

Early detection doesn’t save lives.  Effective and innovative treatments do.  Sadly, we have no control over how our bodies respond to those treatments.  Frankly speaking, doctors may have a general idea as to who may respond well, but they don’t know for sure.  Only 5 – 10% of all breast cancer patients are diagnosed as Stage IV from the beginning.  The rest are considered “early stage diagnoses.”  Up to 30% of all early stage diagnoses become metastatic and metastatic disease is the only type of breast cancer that KILLS.  No one has ever died of breast cancer in the breast.  They die when it moves elsewhere in the body. Unfortunately, most of the general population doesn’t know this, in spite of the millions spent on “awareness” and the lie continues.  

Don’t get me wrong … having an early detection means you start treatment earlier.  However, having an earlier detection does not mean you will never have cancer again.  THAT is the lie that is represented in the statement, “Early detection saves lives.” Detection does absolutely NOTHING. Treatments are what makes the difference.  Research is what makes the difference.  Research to determine what treatments are likely to stop this disease BEFORE it spreads is  what’s needed. A big pink party isn’t going to achieve that.




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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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