Tuesday, July 31, 2018

Catching Up

On a trip to Chicago, Illinois this past June to see one of my daughters, I noticed my physical fitness has declined more significantly than I thought. While there, my daughter, her boyfriend, and I were sprinting to catch a train. Up the stairs they flew. Up the stairs I . . . struggled. No Chicago wind blew behind me, encouraging me, offering to help push me up those flights of stairs. The only movement of air was of my own making through the rapid exhaling and inhaling of my breathing that was not giving me an adequate supply of oxygen forcing me to slow down. My muscular legs from long ago were not there to move me quickly to my destination. My eyes watching the young, fit bodies of my hosts run ahead of me left me feeling quite alone wondering: Should I yell for them to wait? Do they realize I am not right behind them any longer? 

I worried I would have to stop; worried I couldn’t catch up; worried we would miss the train because of me.

My brain pushed my legs to move, leaping over steps when I could, worrying all the while my heart would be my downfall, giving out, causing my body to meet the ground.

It didn’t. But the interaction between my brain and body had me saying to myself, Good grief, I am  . . . (inhale) . . . out of shape!

It wasn’t pretty.

When I returned home, I joined a fitness center. Never in my life have I been a member of a gym, but this one was reasonably priced for my budget, and the membership fee is due on a month-to-month basis; I can cancel at any time. If my daughter hadn’t taken a Health and Physical Education Class required by her high school this summer, I probably would have continued my sometimes daily walks around and around my front yard like I always have. Walking is exercise, and I have done it for a long time, but after feeling breathless sprinting for the train, I knew something had to change. I needed to add more difficulty to my already existing—hardly called exercising at all—routine in order to strengthen my heart, lungs, and muscles that are sadly not what they used to be. Exercising at a gym with my daughter was the change I needed.

My progress is slow—I don’t want to overdo it fearing I will injure myself. And, feeling tired on most days brings with it a lack of motivation leaving me wondering: Am I supposed to feel this tired? Is it age related, treatment related, or both?  It is probably both. Once I get moving, though, I do feel a great satisfaction after working my tired body. It feels good to watch my muscles work while I lift weights; it feels good to feel my heart rate increase with the steps I take on the treadmill. It even feels good when the machine rewards me with its squares of bright orange after I reach my targeted heart rate.  Having my daughter as my work-out partner has proved to make this a fun endeavor and forces me to get moving.

Month number two of exercising is about to begin. I realize I won’t ever be the Lisa from years ago with the red face, heart beating wildly, lungs expanding grabbing all that oxygen and feeling wonderful while not worrying about dropping dead at any moment. Exercise won’t stop my cancer from doing what it is going to do, but it does give me hope that if my next Chicago foot tour finds me sprinting for a train that is about to leave the station, I will be smiling because it feels good to run, and it feels good not to worry that I am falling behind the sprinters, or that I am pushing my heart too hard. I am hoping I can close the gap between us, but if I can’t, I know I will catch up. Just give me a few extra seconds.


Tuesday, June 26, 2018

Parenting through cancer

Cheryl Weinstock, a health writer who has written for several publications including The New York Times and Woman’s Day Magazine, contacted me a few weeks ago after finding my blog. She was writing an article for Cancer Today Magazine-(on-line) reporting on a study focusing on parents with cancer. The study was designed to look at how patients with young children had a decreased quality of life due to cancer’s impact on their parenting ability. Concerns for their children also shaped their decisions about treatment choices. You can find her published article here.

 Photo from article/Photo by Sasiistock/istock/Getty Images Plus

From the very first time I witnessed the pregnancy test revealing its secret, I made a commitment to that tiny person growing within me to see them into adulthood. Cancer has jeopardized that commitment.

When I was diagnosed the first, the second, and the third time with breast cancer of course I was deeply depressed, but, at the same time, I was acutely aware being present for each of my children could not happen through sheer determination alone. It had to come from proven treatments. Treatments that were a gamble. No one knew if the drugs given would keep me alive. No one knew what side-effects would occur as my blood carried the drugs throughout my body. Even with all the unknowns, I was willing to try whatever treatment was recommended for me.

One of the questions I was asked during the interview was: Do patients with children make different choices concerning treatment than those without children? Since I am a parent of four children, I can only answer that question from that standpoint. My answer is, yes.

As long as treatment offers me a chance to keep death away then I was willing—am willing—to try it. If it offers me a chance to continue overseeing the care of my children, to continue being part of their lives even with possibility of sacrificing my quality of life then I will try it; it is that important to me. (Within reason of course, being alive and unconscious is unacceptable.) 

For example because I was familiar with the drug Taxotere—having been treated with it during my stage one diagnosis and knew the side-effects it caused (hair loss, intestinal difficulties, fatigue, decreased immunity, etc) I welcomed it. If I had had no children at my stage IV diagnosis, I might have chosen to forego that drug. Instead I planned my life around the side-effects. Wanting to live for my kids is a fierce motivator.

During the process of Cheryl’s writing of this piece, we spoke a few times. In between one of our conversations I realized that the study she was citing concerning this issue of patients parenting with cancer I realized I might have been part of the study she was writing about. My suspicion was confirmed when I read her article.

It was six months after my stage IV diagnosis in 2013 when Eliza Park, psychiatrist at UNC Lineberger Cancer Hospital in Chapel Hill, NC interviewed me. My goal then as it is now was to live as long as possible because of my children. At this time—my third diagnosis with breast cancer—I had three soon entering college and one finishing fourth grade. The thought of not seeing my youngest to the end of her high school years was worse than the thought of my dying.  She was 10 years old. How would she remember me? I had been her main caregiver, how would other family members—my husband, his parents—respond to her needs? I had a plan, would they care about that plan as much as I did? I was helpless. Completely at the mercy of whatever my cancer was going to do to me. It was a horrible position to be in.

(The results of the study are found here.)

Another question asked by Cheryl concerned my thoughts of whether an oncologist should educate patients about how each treatment can affect their ability to parent effectively. That question was also asked of me back in 2013. My answer is the same today as it was then. An oncologist’s job is to treat the disease. They can only guess how an individual patient will respond to and what side-effects might occur. I think oncologists should direct their patients to resources and professionals trained to help with parenting concerns—as my doctor did.

I do believe that an oncologist should build a caring relationship between themselves and their patient. Talking about children should be part of that relationship. Simple questions like "how are your children" can make a patient feel as if the doctor cares about their life beyond the hospital doors. My first oncologist was not so great at this. My second oncologist makes it a point to ask how everyone in my family is doing just about every time I see her.

During the study I remember being interviewed three times. Each time I suspected the goal was how to better serve this particular group of patients through the development of programs. Programs that would help parents as they stumble their way through talking about their illness with their children, helping them work through their anxieties about discipline, and having discussions with those who will take over their responsibilities when they no longer are capable. I suspect many parents would utilize such programs.

Toxicity of treatments does impact a parent’s ability to care for their children. Improvements in the quality of life for these patients—and for all patients with cancer—can only be achieved when less toxic drugs halting the progression of disease become available. In the meantime, professionals will continue looking for ways to help advanced cancer patients with children parent through cancer.

If you would like to read more about being a parent with cancer and the difficulties that children face because of their illness, please follow this link When a Parent has Cancer.


Wednesday, May 16, 2018

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

Wednesday, April 4, 2018

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.


Thursday, March 29, 2018

Thankful for a Thankless Job


My new job is a thankless one. Much of it involves having to continually remind the 4th and 5th graders in my care the school’s basic behavioral guidelines. Seemingly, they did not learn to respect the school’s property, themselves, and others in their earlier grades. These students are in my class because of some academic challenges, but these challenges could be remedied, I believe, with some stricter behavioral rules and expectations found outside of school. If these simple rules aren’t followed here, what rules are being broken beyond the schoolhouse doors?

Teacher burn out, want of higher pay, societal ills . . . come see my classroom for a day. It will all make sense.

I have had some mean comments made to me like: “You can’t tell me what to do. You’re not my mom!” “You’re old.” “You’re ugly.” And, “Get your wrinkly hands away from me.” All that spewed at me by an eleven year old child. A child with no boundaries about what he should and should not say. A child who doesn’t understand he is taking valuable learning time away from his classmates with his disruptive behavior. Even if I knew the intricacies of his life outside of school, I am certain I cannot give him what he needs in a class of 20 students that I manage alone since the lead teacher resigned two weeks ago. 

Then there are a few girls who struggle for power. They try to control the classroom and to control their sometimes friends/sometimes not friends. They yell demanding respect while giving no respect to anyone.

I tell these children: walk down the hall quietly; respect others; don’t call each other names; treat the classroom equipment with care; keep your feet on the floor; please stay in your seat; please pick-up your trash . . .

Why can’t they get these simple rules? It blows my mind!

My body has no more to give the world when I finally reach home. Yet, I get up and do it all over again the next day.

Besides the additional income, and the thrill I experience when a child finally understands what to them seemed incomprehensible, those four hours telling kids to be quiet during homework, drilling three times nine, or learning about idioms, I almost forget my diagnosis. That alone is reason enough to keep going to a thankless job; one that I am thankful for. 

Monday, February 19, 2018

Survivor




Carefully placed 
under tissue paper I found 
nestled between
colorful cottony socks 
in a pouch of shimmering silver, 
were three golden ribbons 
like crossed fingers of hope, 
a pair of earrings 
and a small charm--
that medal of honor
tiny beading attached 
linked one after the other. 
One word repetitiously 
encircling the third, 
survivor, survivor, survivor, survivor 
it read. 
Meant to bring joy
by the sender to me-- 
an early stage cancer patient 
treatment now ended 
deemed cancer free. 
Do I tell her I’m not 
nor never will be 
the survivor she is 
with cancer behind her
instead of in front? 
How once I too thought 
when the treatments were done 
I was a survivor 
and would gladly have worn 
that delicate necklace 
of silver and gold 
with that word and the hearts 
the meaning so true, 
at the time. 
Or do I say thank you 
and nothing more, 
letting her think
survivor, 
a word we both share? 
With cancer behind, inside and ahead, 
my eightieth infusion 
just hours away, 
survivor, survivor, survivor, survivor, 
with the four little hearts 
that golden ribbon of hope 
will remain tucked inside 
that silvery pouch 
my silent reminder 
a word I can’t wear. 
Survivor I want to be; 
survivor I hope to be. 
Survivor,
survivor?
It's not supposed to be me. 

Thursday, February 1, 2018

Quick Update


Yep, it's true. My January 29th scan was beautiful! Still having trouble believing it.

Next scan will be 6 months from now--simply wonderful.