About Me

Oncoming death is terrible enough, but worse still is oncoming death with time to spare, time in which all the happiness that was yours and all the happiness that might have been yours becomes clear to you. You see with utter lucidity all that you are losing.― Yann Martel, Life of Pi


The quote above fills me with powerful emotion. Today, my tears don't flow as often as was the case at the beginning of my diagnosis, but they do remain ready at any moment to spill over the edge. I am still saddened by what I will miss. I am glad, though, to be able to give attention to little undone details of my life that I would have put off if not for this path I must take.

January 22, 2015 

Quick version:

Born 1964, cheerleader in high school and 1 year in college, graduated from the University of NC at Charlotte, married in 1993 - still married to the same man, twin girls arrived in 1994, son born 1996, daughter born 2003, homeschooling family, animal lover, enjoys sewing/knitting, writing and learning, healthy all my life until 2005--diagnosed with stage 0 breast cancer, recurrence in 2009, stage IV 2013.

Long Version:

In 1994, I became the mother of identical twin girls. From the moment I knew I was pregnant, I had two goals: first, to do everything in my power to give my children a healthy start and protect them thereafter; second, for me to live long enough to see my daughters become adults. After 28 weeks of pregnancy, my goals were jeopardized. I found myself in pre-term labor. Thankfully, with the help of modern medicine, their birth was delayed. My doctor ordered immediate bed rest, so I left my job where I placed people in permanent or temporary employment positions and willingly created a new living space for myself. Everything I needed was at arm’s length except for food, bathroom needs and doctor’s appointments. For the next 8 weeks, I was bedridden--well for me it was couch-ridden. I felt like such a sloth hardly moving from that place. Finally, at 36 weeks of pregnancy, I delivered two healthy babies. Life for me was changed forever.

In 1996, I added another little person to my life. My son was born. (That pregnancy was far easier than my first.) Now I had three children.

In 2003, my last child was born--a daughter. Now there were four.

When my first three children were nearing school age, I could not bring myself to give my children to someone else to teach. I knew it was impossible for anyone else to care for them as I did. Since I had a degree in K-6 education, I thought I could teach them myself. That began what turned into years of homeschooling--every year except for two years of high school. The oldest three are now in college--East Carolina University, University of NC at Chapel Hill, and University of NC at Wilmington.  I am still homeschooling my youngest today.

Cancer has threatened my second goal of seeing my children into adulthood. This shows me that I am in control of nothing, although I sure tried. My three oldest children are almost ready to be free of me. Two are juniors in college and one is a sophomore. My youngest is eleven--so very young to lose a parent. For her--really for all four--I take the treatments recommended by my oncologist and researched by me hoping this will give me time to see her grow and become a mature, independent person. Staying alive for the length of time needed to accomplish this goal will be difficult. 

Cancer has also threatened the plans my husband and I had for the last part of our lives. I know he will be fine, but it makes me sad that I won't be here to enjoy his retirement and the grandchildren that I hope will come.

My story of cancer began in April 2005. My right breast never seemed normal after breast-feeding my youngest. The skin over the entire top of my breast had thickened. No lumps were present, no redness, just this odd thickening. For two years, I submitted myself to the annual mammogram that revealed nothing. After pressing on the top of my breast simply because I was curious, a yellowish, sticky substance leaked from my nipple and sent me immediately to my gynecologist. She sent me to a breast surgeon. A biopsy was taken. A day or two later a pathologist concluded I had ductal carcinoma in-situ (DCIS) introducing me to breast cancer--in-situ refers to abnormal cells within the milk-ducts--sometimes termed “pre-cancer”. This labeled me at stage 0, curable. I was told that the only option for me was mastectomy. Since I feared an occurrence in the other breast, and I did not want my breasts on my body anymore since at least one was trying to kill me--at least it felt that way--I opted for a bi-lateral mastectomy. I was only interested in never having this be part of my life again.

During my mastectomies, a plastic surgeon finished my surgery by beginning the first stage of my reconstruction. Deflated saline bags were inserted. Over time, saline was added to each bag in order to stretch my skin and chest muscles. When the best size was reached, silicone implants were placed. I chose reconstruction because I wanted to feel as normal as possible.  The cold, round, illusions that are in my chest are nothing like real breasts.  At least I feel a little better about my self-image--though only in clothes.

In 2009, I was talking to a friend and slapped my hand to my chest.  I felt an electric shock. My hand immediately returned to my chest, and yup! I found a lump. A tiny little horrifying lump about two inches below my clavicle bone near my sternum. The same right side where my first cancer story began. It was movable and did not hurt unless I messed with it too much. Back to my breast surgeon I went. I had just seen her three months before and was sent away to return in a year. Yes, doctors miss lumps too. My surgeon immediately cut the lump from my chest and dropped it into a glass jar.The lump of tissue only measured 5 mm, but it looked huge to me floating in the liquid hiding the tumor inside. It was so very ugly. My diagnosis this time was IDC. (invasive ductal carcinoma) The cells had broken out of the milk-ducts and were invading healthy tissue. Luckily, no cancer was seen by the PET scan. (PET scans only see cancers 3 mm in size and larger.)  Since the scan showed no metastasis of the cancer, I was told local recurrence, stage 1, still curable. Course of treatment for me this time would be chemotherapy and radiation.

My type of cancer is HER 2 NEU positive breast cancer. These HER 2 NEU genes (human epidermal growth factor receptor 2) make proteins. Sometimes these genes mutate, and the result is too many proteins (also called receptors) being made on the outside of breast cells. When activated these receptors cause the cells to grow uncontrollably. Recent drugs developed to attach to these receptors on the outside of the cancer cells stop the nucleus from receiving signals to grow and divide. Drugs like Herceptin, Perjeta, and TDM-1 are helping patients like me live longer with this disease. 

The three year mark was getting closer.  I have written about this ordeal in my August 2013 blog posts called The Back Story 1 and 2.  The following is a quick summary:  

In 2012, my voice sounded hoarse. A CAT scan of my neck revealed nothing. (There are lymph nodes that traverse the vocal nerves descending into the neck.  Those nerves control the vocal cords. These lymph nodes can be places of metastasis for breast cancer patients.) 

I found a lymph node the following March at the base of my neck at the right front just above my clavicle bone. I had an appointment with my pulmonologist the next day for a check-up concerning allergies, so I decided I would have him evaluate this lymph node. He found two smaller sized nodes nestled along my clavicle bone not far from the one I found.  The doctor phoned my oncologist. An opening was available at his office that day so away I went to see him.  He ordered a neck and chest CAT scan for the next day. The CAT scan revealed a 2 to 3 cm tumor butted against my esophagus that most likely began in a mediastinal lymph node. This was believed to be the reason for my hoarseness. The tumor was in the area where my right vocal nerve is located, so most likely the tumor was pressing on that nerve.There were also several small tumors in both my lungs. After a biopsy was done of the tumor near my esophagus, a pathologist reported that I once again had HER 2 NEU positive breast cancer. Now I was stage IV, incurable, deadly.

Over the past 8 years, I have not been actively treating my cancer. After the first two diagnoses, treatments and reviews of several scans, I was considered “cancer free” or "no evidence of disease". Nevertheless, I have had cancer in my body every day since 2005.  My own breasts cells working against me. Robbing me of all that I love and of future memories with my family.

Why the Blog?

Throughout my life, I have often taken my thoughts and written them so I could sort out my feelings as I wrote. Cancer of course began a period of much writing. When I started to blog about my worst cancer diagnosis, I wanted to give people I know an explanation of why I had disappeared from public view if they were interested and because I didn't feel comfortable telling every person I saw, "Oh, by-the-way, I am stage IV." I also thought this was a good way for people to find out how I was doing. With a blog, anyone who might be curious can find out without having to awkwardly ask, “How are you doing?” I thought as well it might help someone somewhere in this world struggling as I am with this disease.  I have spent many hours reading the blogs of others with stage IV breast cancer. Although depressing at times, it has been helpful to me to read about how others cope and what happens to the body as the disease progresses. It helps me prepare for what might happen to me. I like to be prepared. It also helps to know that there are others experiencing the same life-altering horror. There is comfort knowing I am not alone. Research has shown writing about one’s bad experiences can be therapeutic. With blogging, I am telling many people about my burden, my experience, giving it away to anyone who reads my words. My thoughts are released, emotions explored, and coping strategies discovered.

As my disease progresses, there will be more of my story to write.  It will be difficult to write and live, but it is my story.  Certainly, I wish I had a different one to write. Just like happy stories are waiting to be told, so are sad ones. This is mine.