An Inside Look at Breast Cancer and Survivorship

An Inside Look at Breast Cancer and Survivorship

By: Danielle Incognito

 

For many in October, the pink ribbons come out. That theory rings true for Danielle Incognito, a writer for New View Media Group, who is a breast cancer survivor. Danielle approached the editorial staff about writing a personal story about her battle to commemorate Breast Cancer Awareness Month. She shares her story below.

 

My name is Danielle Incognito.  I am a mother, a wife, an Auntie, a daughter, a teacher, and a breast cancer survivor amongst many other things.  I never allowed breast cancer to define me as a person, and much of that lesson I learned from my younger sister, Desiree, who was only 34 years old when she was diagnosed. 

 

May 2012, just around my 37th birthday, was when I entered that “pink club” that younger women are now being called to join at a growing rate. US News reported that 11% of new breast cancers happen in women age 44 and younger.  Under 40, the odds are lower at 7%. My sister and I couldn’t have hit the lottery with those odds? What is more surprising is that we didn’t carry the gene mutations most commonly associated with young breast cancer, mainly BRCAI, BRCA2, or TP53.  The reason I know this is because I recently had a meeting with a geneticist at Sloan Kettering in Montville. I, my sister, and my father (who had prostate cancer last year) did not ever share any mutated gene. We are still one of those “scientific mysteries” that will continue to be studied. 

 

Desiree saved my life.  She was a 34 year old woman who was just beginning her new life as a widow with two small children (Mark had died of a massive heart attack at age 38). After a long year of mourning, she picked herself up and decided to make a great life for her new family without Mark.  She enrolled in a masters program for School Psychology, and she filled her days with school work while she immersed herself into her children’s activities with the help of our mother, father, brother, and me. We all took a turn and a role in her “new normal.”

 

The dreadful day came, when on Thanksgiving weekend at my parent’s cabin, Desiree felt a lump in her breast.  She asked our mom to look at it. She and our mother were both in denial, so Desiree marched on to New Jersey and back to school the next day.  She was so “bummed” that she had to lug her books into the local breast center “just to be safe.” She would have the lump looked at, and then she would get on with her day.

 

That day changed our lives forever.  She had breast cancer. Later, we would find out that she had stage IV metastatic breast cancer that has spread all through her lymph nodes and to a spot on her liver.  Metastatic breast cancer is breast cancer that has spread to other parts of the body. Currently, it cannot be cured, but it can be managed for many years depending on many factors.  At her initial appointment with her oncologist, she was given a 25% chance of living 5 years. She defied those odds as we knew she would. With determination and faith, Desiree picked herself up once more and faced her second major battle in life.  She immediately transferred to Sloan Kettering in New York City where she would battle with a team of doctors for the next seven years during which time she finished her degree and even worked in NJ schools. She began her medicinal journey on a least aggressive course of treatment where she could keep her hair and still remain active.  One of those treatments, Herceptin, targeted the HER2 component of her disease (a protein that divides breast tissue at a normal rate in a healthy woman). According to Sloan Kettering, one in five women have extra copies of Her2/neu gene, and they produce an oversupply of the protein. She was treated for hormone, HER2 positive breast cancer over seven years.  Most of the drugs gave her several months of stable disease. She eventually started Taxol and lost all of her hair. A close friend from high school came and shaved it off for her as her daughter, Reese, watched. She was honest with her children from the beginning in terms they could understand. 

 

Close to her fourth year mark of her cancer diagnosis, she started having pressure headaches which turned out to be spots on her brain that had metastasized.  The brain doctor explained to us that her cancer had spread in a way that would copy a spray effect of water. Spot radiation helped for a short time, and full brain radiation did the same.  It was the only treatment offered because as women battling will tell you, chemotherapy cannot pass the brain barrier. By year six, Desiree had a massive seizure in front of her two children.  She recovered like the “rock star” she was. She couldn’t drive anymore, and little tasks became difficult, but she never wavered from telling me, “We got this.” I believed that we had. She truly believed it too.  It was not until December of this past year that our family believed differently. Her oncologist told us that the cancer had spread to her spine and spinal fluid, and it would only be a matter of weeks. She would go to sleep.  She fell asleep on January 8th, 2019 with all of her family and close friends in hospice care. Desiree survived seven years of an aggressive type of breast cancer.

 

What is a survivor?  I am considered a survivor.  It has been seven years since my diagnosis.  After my sister’s diagnosis at age 34, I was advised to have an MRI. After suspicious films and 12 needle biopsies followed by a core biopsy, I was diagnosed with breast cancer at 37. 

 

I was the lucky one.  Mine had not spread to my lymph nodes, but I opted for a double mastectomy and several months of chemotherapy because they had found invasive cells in the lymphatic system of my breast tissue after the 6 hour operation. I can honestly say that I handled the whole experience “like a champ,” and I believe it is because I actually felt “lucky” after my sister’s diagnosis.

 

Mind you, I also had a great family, amazing kids, a mother that doted on me while I slept, and a mother in law that was willing to help with anything and everything.  Most importantly, I had a very loving husband with a great sense of humor. I remember Luke walking in my hospital room after my mastectomy with a big grin and a very trendy New York shopping bag shouting, “I bought you boobs!”  They were actually foam pieces that I would use until my skin expanded and I had enough room for implants. He also emptied my surgical drains after each operation, and still, he would make some kind of joke. He would walk into our bathroom with his medical kit and call me “his own Barbie.”  My therapist actually asked me if he could steal that line to help other breast cancer patients. Like Barbie, I have now two, flesh mounds with “missing parts”. I never chose to get them made or tattooed. I guess I am ok with being like Barbie! I can tell you first hand that having that support and having someone still make you feel beautiful is key to being a young breast cancer survivor.

 

I am not going to lie and say it was easy having chemotherapy from nurses with hazmat suits, or giving myself shots for infection prevention the day after chemo, or watching half my hair fall out, or digesting Tamoxifen that aged me for three years as an estrogen blocker, or not being able to get out of bed to spend time with my three babies after chemo (they weren’t really babies, but I still call them that at ages 21, 19, and 15 currently), but I knew I was the lucky one “relatively speaking.” I took a page from my sister’s book, and I carry it with me always.  I know she struggled with the fact that she did not look sick for a long time, and so people assumed that her cancer was gone. She was so strong, beautiful, and smart, and we her family, especially, refused to see her as “sick.” But, that is not how metastatic cancer works. If you turn on any tv commercial you can see women described as, “living a new normal.”  She wanted to be as normal as she possibly could. If she had a “pity party,” it would be for ten minutes, and then she would decide that “faith came before fear.” 

 

I was sick for a short time, but I knew there would, God willing, be an end for me.  She knew that she would eventually die of breast cancer, even though she wasn’t willing to succumb to it. She talked about her grandchildren.  She talked about tomorrows. She called herself blessed and inspired so many people to fight and survive their own personal battles, sometimes so much, that friends and family often found themselves complaining to her!  I remember being on the beach with her after her diagnosis. She turned to me and said, “Getting breast cancer was one of the best things that ever happened to me. I was feeling sorry for myself after losing Mark, but now I want to live.”  After that, she celebrated every moment and cherished every milestone. She may have not survived the second half of her life, but her legacy and impact will.

 

I had the pleasure of teaching a young boy whose mom was diagnosed with cancer last year.  I asked her about her journey, and she reflected on her milestones as a young woman diagnosed with breast cancer.  Dana McGill, a wife and mother of two from Hasbrouck Heights, was gracious enough to share her journey with me:

 

As we get older, we tend to dread another birthday. This year was no different for me, but I was dreading my birthday because it was the day I had to go for a biopsy of a lump I found myself in my right breast. My life was forever changed on my 43rd birthday. I was told I had breast cancer. I was thrown into an unknown world on Nov. 1, 2018. I began meeting with doctors and was told I had a lump about 5 cm in size and was considered ER/PR positive and HER 2 negative.  The plan to treat and beat this cancer was Chemotherapy, a double mastectomy, and possibly radiation in the end. I began chemo in November 2018, I had 4 rounds of AC and 4 rounds of Taxol. I finished my treatments in March 2019.  I was able to tolerate all the dreaded side effects fairly well. Of course, losing my hair was the hardest to cope with. But with the support and help of my family I shaved it off and eventually got used to my new “look”. After I finished chemo, I prepared myself for surgery. I had a double mastectomy in April 2019. An 8-hour surgery that was quite painful to recover from, but I got there. After healing from surgery, I was told that radiation was recommended. In June 2019, I began 28 radiation treatments. I was not a fan of going each day but continued to put one foot in front of the other and kept showing up. At one of my appointments with my oncologist after surgery I was told that my tumor was actually HER 2 positive. My heart sunk.  I knew this meant more treatment, more infusions, another YEAR of treatment every 3 weeks. But once again I just said, “it is what it is” and I continue to show up every 3 weeks. This past year has been by far the hardest year of my life. With a breast cancer diagnosis comes, yes, a lot of tough treatment, surgeries, and recoveries. But it also comes with a huge mental game and lots of fear. I continue to push myself to keep going, to be positive, and to embrace every day. 

 

I believe you are forever changed after being diagnosed and you will have some good days, and some bad days and that’s OK. We go through and continue to go through so much. And although the scars may fade, and our hair grows back, there is still so much happening in our bodies because we had breast cancer. But despite all of that, I am looking forward to my birthday this year because I am here to celebrate it!”

 

I, like Dana, am changed forever.  My hair grew back, and my scars (after three surgeries) are beginning to fade.  I look in the mirror, and I do see “battle scars”, but I try to see “Barbie” instead of cancer. I will always remember that cancer grew inside my body, and a small piece of me will always worry about the future and the future of the young girls in my life.  Maybe, one day, I will be one of those women who get painted as a piece of art to celebrate my win! I admire those women.

 

I, personally, can look forward to more birthdays, now with only one check up a year at Sloan. It will be there that I reflect on the past seven years.  It will be there that I miss my sister beside me. It will be there that I see women of all ages waiting for their chemo treatments, some as beautiful as my sister when she was diagnosed, and some so sick they need a wheelchair and oxygen.  But most of all, I will thank God that I am a survivor, that I know many survivors, and that my sister survived seven birthdays. I will most definitely bow my head and pray that my daughters (Victoria age 21, and Julia age 19) along with my niece (Reese age 12) will never have to call themselves survivors (as my husband holds my hand tight and tries to make me laugh.)  I will sit there knowing that I am a mom, a wife, and now a full time Auntie to my sister’s two, beautiful children, Collin and Reese. (My husband, my children, my parents, my brother, and I will now work together to raise her children.) I will also plan to write that memoir that I always promised her I’d write. And, for different reasons now, I will hear my sister whisper into my heart, “Danielle, you got this.” 

 

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