Five Years of Moments

When I first learned my breast cells were on a path to destroy me, thoughts of living to see tomorrow were bleak. I scrambled to purge and pack my belongings so my husband wouldn’t have to deal with them after I died. I worked on completing projects that I had been putting off finishing until life slowed down. Staying home was a choice because I was preparing to die. Leaving home to have fun, I thought, would be wasting my limited time, hours lost that I couldn't get back. 

Amazingly, here I am five years after my first treatment (May 6th, 2013) for stage IV breast cancer. The thought I might die tomorrow still enters my mind at times, but my thinking has became more optimistic. As time moved along, I began thinking I will be alive tomorrow. In fact, on days when I am feeling well I believe I will see tomorrow, and the day after, and the day after that. I have even entertained the thought I will be sitting at this same desk, in this same chair, writing about my 6th year of treatment for my disease. 

Over these five years I have allowed myself to relax and not think so much about dying. Staying busy has helped since it keeps me focused on other aspects of my life. Watching a television show that really adds nothing to my life except some laughter or some information about the world used to feel like I was throwing away my limited time. Now, I can watch because I have given myself permission to recuperate from work and the stresses of daily living. 

I am certain I am feeling this way because I am tolerating the treatments, my cancer is quiet, and my quality of life is allowing me to live almost as if there is nothing wrong with me. Perhaps and most likely, the biggest reason I am able to relax more today than five years ago is because my most important work is nearly finished. My youngest daughter who was 10 when I was diagnosed stage IV is now 15. A lot of relief goes with that.

Three weeks ago, though, reality slapped me hard in the face reminding me I am physically fragile. It reminded me that my rejecting the thought I could die tomorrow—or today—is fantasy. My “not dying today” mantra that I happily tell myself is in fact a lie. 

On that Sunday, I arrived at my treatment center for TDM-1 (Kadcyla #67) hoping for an event free appointment. I didn’t want to be denied treatment like I was at my last scheduled treatment. My platelets and absolute neutrophils were low. The platelets were 68,000 in 1 cubic millimeter (normal between 140 and 440,000) which is low but not so low I cannot receive treatment. But, in combination with my absolute neutrophils at 1.7 (normal range is 2.0-7.5), I was refused treatment. That day, I returned to my car and drove those 2 hours and 15 minutes home in disappointment. Thankfully on this treatment day, my platelets and absolute neutrophils were back in a good range. But, something else was amiss.

“Are you noticing any dizziness, lightheadedness, or shaking? What have you eaten today?”

“No, I feel okay. I ate a banana and drank coffee on my drive here.”

“Your glucose level is a 37.”

“What is it supposed to be?”

 “Above 70.”

“Oh.”

“The on-call doctor has spoken to your oncologist and the decision was made that you can be treated, but you can’t go home today. That glucose level is dangerous, and we can’t let you drive.”

At that moment, I felt afraid. I thought I could die . . .  today. 

Would I get to go home, ever? I am not prepared. It wasn’t supposed to end this way.”

A team of detectives, endocrinologists, were assigned to my case.

From Sunday afternoon to Wednesday evening, I sat in a hospital room waiting to find out what might be wrong. Blood tests were done to see if my adrenal glands were producing the correct amount of cortisol that works to control blood sugar levels. (Cancer can metastasize anywhere, so there was concern that my adrenal glands could be diseased. A CAT scan was done to look for metastases in my abdomen and pelvis—it was clear!) Another adrenal produced hormone, AC, was checked, too—it was a little low. With the AC hormone level low, I panicked a little. A tumor in my brain could be the reason my glucose had dropped so low. Since I am a stage IV patient, the doctors were concerned about the possibility of a tumor(s) inhibiting the function of the hypothalamus and pituitary gland that signal the adrenal glands to release its hormones. Scanning my brain was not ordered, though. The doctors wanted to do another test first.

The next test would determine if my pancreas was working and that I didn’t have a rare condition of non-diabetic hypoglycemia. I was told I could drink water but eat no food until testing was stopped. The fasting could last as long as 72 hours. In the end, luckily, I was allowed to stop at 57 hours. Yep, you read that right—57 hours with nothing to eat—a record for me. On the third day, I was feeling not as hungry and had some energy I was not expecting. Turns out, my pancreas works! And, my liver did its job too as it responded to my starvation—gotta love those ketones giving my body some needed energy. My glucose levels rose and remained in the high 70’s. My adrenal hormone that was low will be checked again at a later appointment. For now, concerns about any brain tumors have been put aside.

Being in the hospital—the first since my diagnosis—reminded me that my fantasy of many tomorrows is just that . . . a fantasy. The only certainty I have—that anyone has—of being alive at any given point in time is the one being lived at this moment. 

Each moment I have lived that has turned into five years of many moments has been wonderful. I feel so lucky to have lived each one. As soon as the fear and worry of my dying on that day subsided while I sat in that hospital bed, I returned to thinking I will be alive today and tomorrow because that is what I want to believe. I want the carefree bliss of imagining the next five years of many moments, still writing, still enjoying living. It may not happen, but for now, I am going to keep believing it will even if it is statistically and probably a lie.

Bing images

Fear and Hope Competing

The month of April is one I love, and one I hate. 

My twin sisters were born April 27, 1966. My youngest daughter was born April 6th 2003. I love everything about that!

I hate that the beautiful month of April is tainted by a diagnosis I cannot love. 

However, I can love and do celebrate that this month marks the 5th year of knowing I have metastatic breast cancer, and I am still alive!  

Yesterday, the organization SHARE CANCER SUPPORT  published my story on their website.

Please visit for more information about this organization. There you will find support if needed and other shared stories from breast cancer and ovarian cancer patients.

My story is below. You can also read it here .

On a sunny day in April of 2013, at the age of 48, fear and hope began a competition unlike any other I had experienced. I was told I had a terminal disease; my life’s story had reached its final phase. Fear and hope were racing to the finish line of my life. On that day and the days that followed, fear was refusing to back down and hope seemed far behind. With much left to do on my life’s to-do-list, I felt helpless.

Ten years before I became a terminal—stage IV—cancer patient, physical exams and two mammograms over two years gave no indication there would be trouble ahead. There was no lump. Instead, there was an odd thickening underneath the skin making my right breast feel firmer than my left. Since the mammograms showed nothing, I was told all was normal and sent on my way.

It wasn’t until I discovered a yellowish, sticky discharge from that breast that a Physician’s Assistant thought it was time to react. Some tissue was taken then sent to a laboratory. Someone within that lab determined the cells within the ducts of my breast were cancerous. The diagnosis was ductal carcinoma in situ (DCIS), a breast cancer that is confined to the milk-producing ducts within the breast. These mutated cells had not invaded any of the surrounding tissue so my condition was defined as stage 0 disease.

After the whirlwind of appointments and information gathering, I underwent a mastectomy to remove the extensive hardened area of the diseased breast. I opted for the other to be removed as well hoping to prevent any future disease in that breast. Weeks of healing took place. Then, slowly, small increases of fluid were added weekly to the tissue expanders placed under my chest muscles during that first surgery. The expanders worked to stretch my tissues until eventually two cold, hard, artificial breasts were created.

During this time, life was never on hold. People needed me. As soon as I could I returned to my busy life. With around a 98% chance of not dying in 5 years, I felt confident I would be among the living and cancer free as well when 2010 arrived—hope was winning.

Unfortunately that magical milestone year would not be mine to celebrate. As the final pages of that calendar year were about to be completed I found a tiny lump—five millimeters to be exact—just below my clavicle bone on the same side where my diseased breast had been. My breast surgeon took quick action removing it in the examination room. I will never forget watching that deadly tissue floating in the fluid-filled container she plopped it in after freeing it from my chest. Fear was in the lead again, but it took a few steps back when a CAT scan revealed no lymph node or organ involvement. Stage 1 disease was the diagnosis. The relief I felt manifested in my jumping up and down in my kitchen after ending a phone call from my surgeon.

Treatment began. Taxotere took my hair and much of my energy with it. Herceptin and carboplatin added to the gastrointestinal difficulties that Taxotere had bestowed upon me. With radiation treatments completed, fear now was following hope too closely. Even so, adjustments were made, and life continued as it had before.

My oncologist had informed me that Her2+ disease is aggressive. Statistically, if it is to reappear, it will do so within three years.  Year three of no symptoms was a few months away. Life was good until the day I sat on my couch watching television. Deciding this was a good time to check my neck and clavicle lymph nodes, my fingers moving carefully at the base of my neck suddenly stopped. There it was: a swollen lymph node. I didn’t need a doctor to tell me what it was. A few days later a CAT scan caught my medical team’s attention. There were cancerous nodules in both lungs and an over-sized lymph node deep within my chest. In order to establish a diagnosis, down my esophagus an instrument went carrying a small needle with the intent of retrieving a few cells from that lymph node pushing against my esophagus. One look through the microscope ended any speculation. Fear of dying from this disease had found its permanent home. I was doomed.

Glaring at me from all directions were statistics stating the average life-expectancy for a stage IV diagnosis of breast cancer was three years. Although three years is an estimate and isn’t true for all patients, and probably needs to be updated, it haunted me. That blanket of grief made me certain I would be dead within the year. 

Fear was in the lead. But, with each passing scan and each day I lived, hope started to gain momentum. I began experiencing happiness again. I saw another spring and then another. Taking a stroll recently around my yard taking in the beauty of the beginnings of my wisteria vine’s purple buds appearing proving to me there is life inside those dead looking branches brings me such joy. I am experiencing another spring. Never did I think I would live this long.

Incredibly, the cellular biology of my cancer responded to treatment. Herceptin, Perjeta, and Taxotere gave me another year. Kadcyla and Cyberknife radiation—to one troublesome lung nodule—have given me years. With scans showing no disease big enough to be seen, I celebrate each day that I have been able to watch three of my four children become adults and my youngest begin her first year of high school. Because of the work of scientists, doctors, nurses, clinical trial patients, radiation technicians, oncologists, patients on social media, and others unknown to me, my story continues.

In the end fear will make its final move when I am told there are no more options. At that point, hope and fear will no longer be competing; sadly, fear will prevail. Not the fear of my death, but the fear of the process of dying; fear that cancer and the side effects from treatments will prevent me from accomplishing my personal goals. For now, though, hope remains in the lead.  I am so grateful.