Jean Burns – {Live Another Day}

Lesley Glenn, fellow LBBC Hear My Voice Outteach Volunteer, is doing a fantastic job of getting our stories heard in her blog – voicesofmbc. I was proud to be a participant!

Voices of Metastatic Breast Cancer

I am so excited for you all to read Jean’s story.  I love her down to earth conversation in this interview, and I felt like I was sitting across from her at a table having coffee, listening, sharing and learning all about how she thrives with metastatic breast cancer.  Jean is also a fellow member of the “Hear My Voice Outreach Volunteer team” with Living Beyond Breast Cancer.   I hope you find hope and strength in her journey.

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Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?

Like most busy working mothers, my life was filled with various responsibilities – work, taking care of my family and home, spending time with my husband, running my kids to various school and sporting activities, enjoying friends, etc. Because I was busy…

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Time to Visit the Grand Poobah

Well, it’s been just over six months on the A/A (Aromasin/Afinitor combo) and what a roller coaster ride.  Seems I go about 4 weeks and then the numbers showing liver dysfunction (as a side effect of the Afinitor) go up again, causing the clinical research nurse to pull the med from me.  Wait a week (or two, or three) and once the liver numbers normalize, back on the med at a lower dose.  If I wasn’t in the trial and having to adhere to their strict protocols,  my Onc wouldn’t blink an eye about the liver numbers.

Then, in May, throw in some fun times with breathing issues – all as a result of a residual side effect from my radiation six months ago (radiation pneumonitis).  Thank God for steroids or that would  have done me in!  Nothing like having your pulse/ox at 85 when it should be at 95-100.  But that also meant a whole month off Afinitor.

And now here we are – still trying to figure out if this treatment is even working!  Tumor markers continue to rise on a slow, but upward path, but I also feel pretty good.  Lots of joint pain, but that’s a side effect of the other drug (Aromasin).  Energy is pretty good and overall, I feel fairly well most days.

So, only one thing to do… it’s time to visit the Grand Poobah of cancer status… the PET scan.

Grand Poobah

People with Stage IV Metastic Breast Cancer can tell you all about scanxiety.  It’s the time just before you go in for the scan and just after while you await the results.  For many, they find themselves thinking, “Is my cancer worse, is it better, is it the same?  Will this mean a change in my treatment, bringing on new side effects, maladies, malaise, and overall fatigue to endure… now that I’ve figured out dealing with my current side effects?”  For me, it’s the thought of real chemo… not just taking a daily hormone inhibitor, but the scary stuff. The kind that makes you bedridden and bald. And the thought that another treatment option has failed, checking off one more life-lengthening possibility on my list.  Scanxiety is like watching in slow motion as some amateur magician attempts that crazy trick with the table cloth and the china/glassware.  Will it all go flying across the room, or simply shiver for a few seconds before coming to a quiet stillness again?  Like all things in life, we never know what’s in store for us….

http://gifyoutube.com/embed/vndB8P

Stay tuned…PET Scan is scheduled for this Friday.  Cross your fingers for me!  If the A/A has been working, I may have to opt out of the trial and just get the meds anyway.  If my scan shows signs of progression – we’ll start a new adventure!

A Letter to Rita Wilson

Dear Ms. Wilson:

 

I was saddened to hear the news of your breast cancer diagnosis, but happy to hear that you were diagnosed early and vigilantly received a second opinion, both from your oncologist but also a pathologist.  I am also keenly aware of how important it is for people in the public eye to bring awareness to these types of issues and share their experiences. We are our own best advocates in this fight against breast cancer and I applaud you for speaking out to make sure others are aware of your situation!

 

I noted in today’s People article that you are expecting to make a full recovery.  I am hopeful that is true for you.  As you may not be aware, many of us suffering from Stage IV breast cancer, or Metastatic Breast Cancer (“MBC”) were once in your shoes.  We took good care of ourselves.  We were vigilant about our mammograms, we took all the prescribed medications and treatments prescribed by our oncologists, radiologists, and surgeons.  We followed up regularly with our doctors and continued to perform regular self-checks.  But for 30% of us, the breast cancer returned and had metastasized elsewhere in our bodies.  Sometimes it’s within months, a year later, or as much as 5, 10, 15 or more years later.  And it’s not clear to researchers why this happens to some of us and not others.  Usually the breast cancer finds its way to the bones, the lungs, the liver, the brain, or a combination of same.  And once it does – it’s lethal.

 

And then there are those like me, who were diagnosed Stage IV right out of the gate.  We are given no glimmer ofhope for a cure at diagnosis, only the promise to be in treatment the rest of our lives in an effort to live as long as possible.  My hope is simply to live long enough to see my two young sons graduate from high school, college and get married.

 

Upon a Stage IV diagnosis, all of us “Metsters” still have many of the same treatments – surgeries, hormone therapy, chemotherapy, radiation, gamma knife, etc., but there is no end in sight for us.  When the one treatment ends, another begins.  And it goes on and on until no more treatments remain or work, leaving us to die.  And again, this is the outcome for 30% of those diagnosed with breast cancer, no matter what the initial stage.

 

So, my ask of you, as a well-liked and respected celebrity, is to have a voice for all of those that are DYING from breast cancer.  Shout from the mountain tops that more money needs to be spent on research for Stage IV and finding a CURE!  Prevention has worked – look at your own experience.  We do not need the same exorbitantfunding for that part of breast cancer awareness that we once did.  The message has been heard and women are taking care of themselves and advocating for second opinions and involved in determining the best treatments for themselves and managing their quality of life.

 

But for those of us, at no fault of our own, that are in the 30% that this disease kills – we need your help.

 

Please note these facts below*:

 

• 108 people in the U.S. will die today (and tomorrow, and the next) from MBC; that’s 40,000 people in the U.S. per year.
• The median survival for someone with MBC is 3 years – and this has not increased meaningfully in 20 years.
• Public messaging about the “cure” and survivorship is so pervasive that people diagnosed at Stage IV with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.
• Research funding for MBC accounts for only 7% of the total breast cancer research investment.

 

I conclude by saying that I will pray for you every day to remain in the 70% of breast cancer survivors for the rest of your life.  But I also want everyone to know that being in the 30% that are diagnosed with MBC is devastating, and we need to be heard.

 

Jean Burns

 

#stageivneedsmore

#108everyday 

 

*  http://www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf

The People article can be accessed at the link below.

http://www.people.com/article/rita-wilson-breast-cancer-double-mastectomy-reconstruction