Photo Credit:  Peter Hellberg

Photo Credit: Peter Hellberg

In 2006 at the age of 39, I was diagnosed with Breast Cancer.  It was my first mammogram which was recommended because my grandmother had breast cancer in her early 40s.With additional testing it was confirmed I had breast cancer.  I was devastated couldn’t believe it was happening to me. I had so many questions and concerns.  Telling my family and friends was one of the most difficult things I had to do. My life flashed before me.

It was recommended that I have a mastectomy as the area was too large for a lumpectomy. I opted to do a bi-lateral mastectomy with reconstruction.  I never wanted to deal with this again.  I thought doing this would take care of it once and for all.  I was diagnosed with DCIS Ductal Carcinoma In situ stage o cancer.  It was such a relief I had caught it early.

The surgeries were difficult both physically and emotionally but my faith and the wonderful support of family and friends carried me through it.

I had genetic testing done and tested positive for BRCA2 an abnormal gene mutation that increased my risk for developing both breast and ovarian cancer.  This confirmed my decision to have a bi-lateral mastectomy was the right choice.

I was told I had caught this early and I would not need any additional treatment (no chemo, radiation, or hormones) only follow up physical exams.   I wasn’t completely comfortable with no additional treatment so I went for a second opinion.  The oncologist confirmed I would not need additional treatment only follow up physical exams

Shortly after I finished my last surgery my dad became ill. My mother at the same time found out she had cancer in her small intestine, she was a 7 year colon cancer survivor.  I quickly became consumed with their health and care.  My dad pulled through and my mom had surgery and was ok for a few months but then found out the cancer had metastasized to her liver.  For the next 9 months we watched my mom fight for her life.  My mom passed away November 2009.  It was such a huge loss for my family.  At that time I was having bone pain and had gone for my follow up appointments but the Dr. wasn’t concerned and I was grieving so I didn’t peruse it.

April 2010 I found a lump on my neck.  I had a biopsy and it was determined I had cancer.  My Dr’s explanation was there must have been a micro invasion at the time of my original surgery.  I was so angry.  I felt I had done everything I was supposed to do.

Since I felt the DRs had missed something during my first surgery I made the decision to go to MD Anderson in Houston TX  one of the leading cancer centers to have a needle biopsy, additional testing  and determine staging.  It was determined I had stage IV cancer that had metastasized to my bones.  It was like a bad dream you never wake up from.  I was in shock, angry and scared. It was only 4 months after my mom passed.

I quickly shifted from anger to survival mode.  I was treated with a hormone drug by my Dr at Siteman and did follow up visits with my Dr. at MD Anderson. Side effects were minor. I continued working full time.

I began researching traditional and alternative methods of treatment.  After seeing the pain my mother went through I was not convinced that traditional medicine was the only way to go.   I was shocked at the statistics from other countries.  The US cancer rates were much higher.  I thought I ate healthy until I found out what was in most of the foods I was eating. Preservatives, hormones, sugar.   I totally changed my diet to low sugar mostly organic whole foods diet.  Foods that fight cancer.  I needed to do everything I could to fight this.   My son followed suit and lost 50lb.  To this day my son is my biggest supporter of healthy diet.

My research led me to believe that diet, exercise, stress, environment and spirituality are major contributors in preventing and fighting cancer.  However, most of traditional doctors are not trained in these areas. I was amazed after meeting with several Drs that this is not taught in medical school.

I began exercising regularly, praying, and meditating, reading healing scripture, Joel Osteen, reducing stress and practicing yoga.  I visited integrative and alternative Drs who helped me developed an integrative treatment plan. I developed a stronger faith and a new appreciation for life.

In January 2011 I had some progression and changed treatment plans.I started on a new hormone drug that did not work.  In May of 2011 the cancer had spread to my liver.

I was devastated it was like being diagnosed all over again.  MD Anderson recommended a clinical trial but it was not available there yet. I also visited an Integrative Dr Dr. Forsyth in Reno, NV who did chemo sensitivity testing.

I returned home and there was one spot at Siteman for the clinical trial Parp ABT 888 and carboplatin and I was accepted.   What a blessing this was.  I would not have to travel for this treatment.  I started the trial drug Parp Inhibitor with chemo.  Side effects were mostly nausea and treatments were every 3 weeks.

I continued on the trial drug and chemo.  I had great results until March of 2012 my scans began to show some progression again.  I consulted with my doctors at MD Anderson and Siteman and started a new drug cocktail not yet approved for Breast Cancer but approved for kidney cancer Afinitor.  The drug was extremely expensive but I was approved.  I hoped this would be the one.  After 3 months on the drug I began to show progression.  Dr’s   recommended an oral chemo xeloda.  I was so depressed after this.  Normally I would bounce back after a few days but this time it was different.  I was mentally exhausted.  It was difficult but I made myself exercise, went to my support group meetings, prayed, meditated, started a new book The Power of Now.

By now you’re getting the picture it’s a roller coaster ride of ups and downs.  You think things are going well.  Life almost starts to feel normal again then you receive devastating news.  The goal is stable or no evidence of disease not progression.  My hope is for a cure or at best we can learn to manage advanced cancer like a chronic disease.

In case you’re wondering what a Month in the life of advanced cancer for me is like these are some of the things I have done this month:
Had a CT scan, took oral chemo, blood drawn, daily injections, Dr. Appointments, prayed, meditated, went swimming, went to Chicago, spent time with family and friends, went to church, went to a cardinal game with friends, took our dog on walks in the park , celebrated my  husbands birthday, went to a concert, had dinner with friends,went to the lantern festival, saw beautiful sunsets, went to the zoo with my sister and nieces, planned a trip to Italy. You get the picture you can have joy when facing adversity.  This leads me to the next topic Stage IV Fun.

Stage IV Fun
I was on the phone with a friend and she asked me what I was doing and I said I was traveling and she said “again” and started laughing.  I told her it was all part of Stage IV fun.  She laughed and ever since it has been our motto.   Stage IV fun is not making light of advanced cancer it’s about celebrating life to the fullest.  Not taking life for granted following your dreams.  Each day is a gift.  For me it includes things like making memories with family and friends, sharing meals, watching sunsets, walks in the park, traveling, concerts, going to the beach and taking your dream trip.  So when you think of me please don’t think of me as terminal but as living.

I am so blessed to have such a wonderful support group of family, friends, Dr and nurses.  I have met so many wonderful people through this journey.  Even when traveling to MD Anderson and other places I have been amazed by the support of complete strangers.  I have met several 5, 10, 15 and even 19 year advanced cancer survivors who were kind enough to share their story and give me hope.  They were like angels sharing their miracles.

I have developed a sisterhood with survivors.  I belong to  a lunch group called the Young Metzers.  A group started from the young women’s group at Siteman. We try to meet once a month and keep in touch through email.  I also belong to a group called the Sunshine Sisters a group of survivors I met at the Infinite Boundaries retreat at the beautiful Sundara Spa put on by Breast Cancer Recovery; we keep in touch through email.  They are Drs, Nurses, Directors, Social workers, Marketing Reps, Mothers, daughters, aunts, grandmothers, friends many with young children all living with advanced cancer.

Words cannot express how grateful I am for all the love and support I’ve received from my family and friends.  My husband has been to countless appointments and treatments with me and experienced way more than he ever expected to on this journey. They have raised money for me and breast cancer, participated in the Komen Race St. Louis and Chicago, Celebrate Spot (fundraiser for the young women’s group),  hosted a Bikeathon (proceeds were donated to me), and two were crazy enough to do the Komen 60 mile 3 day walk in Chicago.

I can’t tell you how many cards, prayers, gifts, books, dinners, trips to the dr, even organic vegetables I received.  Cancer has given me a new appreciation for life.  I’ve developed closer relationships with God, family and friends.  I’m not afraid to tell people I love them or give a hug. I’ve learned to pray with expectancy because my faith is strong.  I’m learning it’s ok to let others love you.