Sunday, August 30, 2015

The difficult reality...

Although Shannon and I see each other pretty much on a daily basis and are continuously talking, we never run out of things to talk about. Some days it's small talk or kid talk. Other times, it's working through the nonsense of this still, very new, diagnosis of mine. We will let you know when we have it all figured out; it may be a while.

Meanwhile, we have had some conversations about the fact that some people are having trouble really understanding what this Metastatic Breast Cancer (MBC) diagnosis means. So I asked my Shannon to do a post to explain and I'm happy she agreed. She has a gift for getting all the information she possibly can, comprehending it and presenting it honestly and clearly. Shannon acts as my filter. She reads the information and gives it to me in chunks I can mentally handle. Meanwhile, she is a wealth of information.

Today, she shares some of that wealth.

From Shannon:
The sea of support surrounding Linda is vast.  I am a witness to the daily cards, gifts, and messages in all varieties of love and support.  Family, old friends, new friends, neighbors, and acquaintances everywhere are asking about Linda and offering their thoughts and prayers.  Often times through these conversations, I get the feeling that many people don’t quite understand what this recent diagnosis means.  Linda and I were thinking that it might be a good idea to put something out there to help inform folks.

Although Linda’s breast cancer diagnosis and battle 3 ½ years ago was difficult, challenging, and certainly gave her (and many of us) a new perspective on life, this new journey is very different from the last.
Most times breast cancer is diagnosed, treated, and it ends.  The possibility of reoccurrence is discussed, but it seems unlikely and usually is.  Mainstream media tends to focus on stories of survivors who have fought their breast cancer battle and won and it ends there, with cancer free anniversary celebrations to follow.  There seems to be little public focus on the darker side of the pink ribbon;  the women who will never stop fighting.
Early Stage Breast Cancer is staged I, II, or III.  These stages mean that the cancer is confined (as best the doctors and surgeons can tell) to the breast tissue and the lymph nodes.  Linda’s original diagnosis in 2011 was considered Stage II. She went through a mastectomy, chemotherapy and radiation to rid her body of the cancer.

Metastatic Breast Cancer is very different from early stage breast cancer because it means that the cancer has traveled beyond the breast to other organs and tissue.  Metastatic Cancer is also called Stage IV or Advanced Breast Cancer.  Breast Cancer most commonly spreads or “metastasizes” to the bone, lungs, liver and brain.  It is a systemic disease meaning that it affects the patient’s entire body system.
Like Linda, despite doing all the right things, receiving excellent treatment, and going above and beyond what was recommended, a small percentage of women who are first diagnosed with early stage breast cancer will develop metastatic cancer at some point.  A woman with early stage BC worst fear is metastatic disease.  A woman with metastatic BC worst fear is a spread to the brain.  Linda’s cancer cells have traveled to her bones, lungs, and brain.  This means Linda’s breast cancer cells have made their way to these organs.  Linda’s cancer has nearly the same cellular makeup as it did in 2011.  We know this through a recently performed biopsy of the disease in her lung and surrounding tissue.  Linda still has Breast Cancer, but it is now Metastatic Breast Cancer.  Unlike early stage breast cancer which is curable, Metastatic Breast Cancer currently has no cure.  This is harsh, devastating news and was quite a blow to hear the doctor explain on those first few dark days.

The good news is that there are numerous treatment options now and many more coming down the pipeline.  The goal of treatment for Metastatic Breast Cancer is to weaken the cancer, prevent it from spreading, and manage side effects and symptoms, while maintaining the best quality of life for as long as possible.  While Metastatic Breast Cancer (MBC) has no cure, there is a possibility that patients can get to a point of NED, which stands for No Evidence of Disease.  This, of course, is our hope for Linda while we wait for a cure. 

Linda has made significant progress in just 2 1/2 months since her diagnosis.  She underwent 10 days of Whole Brain Radiation Therapy in late June to shrink the disease in her brain.  We recently learned that the radiation is working and the invaders in her brain are shrinking at a fast pace!  Linda has also started chemotherapy and is doing a stellar job at tolerating the highest dose possible to fight off the yuck stuff.

"Miracles happen to those who believe in them." 
 -Bernard Berenson

In the meantime healing is exhausting work for Linda.  She looks great and at times can seem very much herself (at least to others).  However, her body is working overtime not only fighting the disease, but also tolerating the intense medicine necessary to shrink the yuck, and coping with ever changing side effects and symptoms.  Those are just some of the physical tolls.  

The emotional toll is real and something I dare not attempt to describe.  Managing this disease will now be a large, active part of the rest of Linda’s life.  However much she confides in me, I will never know exactly what she is going through.  Although it is in my nature to try to fix this for her or take it away somehow, I know that is not possible.  I can only hope to offer as much love, support, and comfort as I am able to give.

Now that Linda has a treatment plan and is beginning to adjust to her new life, she has become the one guiding those closest to her through these rough uncharted seas.  This metastatic diagnosis is harsh, overwhelming, and very difficult for all of us to digest.  As those who love her go through a period of grieving for the way things used to be, without knowing it, Linda offers our greatest source of comfort by persevering through this scary time with honesty, hope, humor, and grace.  I know that I am not alone in saying that I am incredibly blessed to have her in my life.

Linda has always been an overachiever in the things that she believes in and is passionate about.  She certainly did not choose this new endeavor, but I believe in her and her ability to overcome the odds!  I believe in Faith.  I believe in Hope.  I believe in Miracles.  I believe in the power of love and prayer!  And I believe with all my heart in Linda!

"Faith is to believe what you do not see; the reward of this faith is to see what you believe"
-Saint Augustine