I admit I was attracted to the title, I’m Still Alice by Lisa Genova because I too am an Alice. I also wanted to broaden my knowledge about Alzheimer’s. I found the book thoughtful, provocative, deeply humanly, and lucidly told. When the movie based on the book was released this spring, I was eager to see how the book translated to the screen. Once again, I was filled with a sense of the courage this fictional woman displayed; a courage shared with real people who suffer debilitating diseases. There is a scene in the movie where Alice, now exhibiting the worsening symptoms of Alzheimer’s, opens her computer and sees her own face, a face she vaguely recognizes. For me, that scene epitomizes the question of identity. In my book, The Broken Chord, the child, Emaline thinks: “I wonder who I am. Who would I be if I had no name, no body, no mama and papa?” and later: “For I think one’s anchor is that sense of self, the verity that one is a continuous being, the one who goes to sleep at night and wakens in the morning.” What would it be like to gaze in the mirror one day and not recognize the face looking back? Take away your name, memory, and lastly your body, what is left? At death, are we born naked into that “undiscovered country, from whose bourn no traveler returns” as so eloquently opined by Shakespeare’s Hamlet? Will I be “still Alice” or a new creature committed to a new future? What do you think?
It’s been a long time since I blogged. Illness interrupted not only blogging but almost everything else. But after a year of treatment for breast cancer, I finally completed The Broken Chord. It can be found on Amazon, available on Kindle and in print. This book explores the life of a young musical prodigy in the early 20th century. Her pursuit of composition and piano mastery is both aided and complicated by her secret and imaginary friend, Griselda. Or is she imaginary? Read the book and find out.
The Happy and Serious Sides of Life
Time has a way of rolling away, going slowly or with lightning speed. All we can do is hold on to each hour and minute. First, the happy side, which is to introduce my first great-grandchild, Hope. She arrived on July 11th, twelve days after her official due date, weighing in at 9 pounds, 4 ounces, 21 inches long. The only sad spot was that her maternal grandfather, Carleton Harlow, who had passed away in early January, wasn’t there to greet her. Our comfort is the belief that he was present in spirit to share in the joy. What a ray of sunshine she brings with her into a very hard year. Welcome Hope!
On the serious side of life, I’m almost at the end of my chemotherapy for a rather aggressive form of breast cancer. I have one more treatment left and although I’ve had some unpleasant side effects, hope things will improve. My doctor lowered my two main drugs by 20% as he was concerned for my safety and has put me on an antibiotic regimen for the next eight days. This is to prevent any intestinal or bowel infection that could prove fatal. Another test is scheduled for today to check on heart function and again labs on Wednesday to monitor whether dropping hemoglobin, red cell count, or immune system readings will require action. I’ve had three blood transfusions over the past five treatments, so hope I won’t need anymore. However, I feel so much better after them that I won’t complain.
After my final chemo treatment in August, I will continue with my every third week herceptin infusions (a gene targeted medication delivered through my port) until the end of April next year. Radiation treatments will probably begin about mid-September. That requires daily trips across town to the Kaiser Oncology location for at least a month with only weekends off!
It seems like a long haul at times, but it’s worth the trips, tests, and record keeping of medications and symptoms to know that life is still beautiful.
I’m slowly continuing work on my latest book. Emaline is a child musical prodigy (circa early 1900’s) whose life is complicated by psychological twists and unexpected obstacles. My original working title was Through a Glass Darkly but am considering alternatives, such as Emaline. I’m at the 47 thousand-word count. Since one never quite knows how a story will stretch out in first draft, or conversely, how much will be condensed or cut, the length is still uncertain.
The arrival of Hope in my world, the sustaining support system of family, friends, and colleagues, coupled with the excitement of writing continues to beckon me to the future.
Traveling back in memory to the little house on Hardcastle, I am once more safe in my mother’s arms. For she was the center of my Universe, and the sight of her could banish any grief or woe. Despite the availability of jobs during the war years, Mama chose to stay home and tend to her children. Practicing economies learned in the Depression, she made ends meet. She gave piano lessons and was not too proud to take in ironing or pick berries for local farmers. With these tiny earnings and a small stipend from my father, she provided a stable and happy home.
Though we never had much, we always had enough. And the finer things of life were never relinquished or abandoned. Mama was an accomplished musician, so often the strains of a Chopin etude or an old folk song would float out into the dusk of our summer yard where my brother and I whispered secrets and planned adventures. The combination of music and lamplight would draw us in just before bedtime, cheeks aflame with fresh air and exertion. When summer turned to fall and winter, Mama often read aloud. The Little House in the Big Woods was best remembered and, over the years, we collected the whole series. Laura and Mary and Pa and Ma were discussed as though they were family.
I also remember how no illness could long endure under Mama’s gentle ministrations. Her hand on my forehead, her dark eyes looking into mine, seemed to ease every symptom, and I knew I would soon be well. Now, as I face a serious health issue, it is easy to find tears filling my eyes. If only Mama were here, she would sit by my bedside, nurse me with simple but nourishing dishes, and best of all, touch my cheek and say, “There, there. You’ll be better in the morning.”
No matter how old we are, no matter how many years have passed, our mothers are never far from us. I recall a visit to a nursing home when I was very young. A long, bony figure of a man with hollowed cheeks and a sunken mouth lay upon a white cot. Eyes closed, he called, over and over, “Mother! Mother!”
At last I know why. For who will remember us when we grow old and infirm? Who but mother?
The current year has been full of surprises, not all of them happy. And while I don’t want this blog to be a downer, I feel I should set the record straight in some regard.
If you’ve read my previous blog this year, you are aware of the death of my dear son-in-law, Carleton, on January 6. A traumatic event leaving behind grief, a complete reorganization and dissolution of life style for my daughter. An altogether sorrowful time which only the memory of his dear and presence can lighten.
After spending two weeks in Vermont with the family, I returned home and tried to get myself back on track. First on the list was scheduling my annual mammogram. Check off that item. But four days later I received a call from Kaiser. They needed to check their findings with an ultra-sound. I remember the thumping of my heart as I heard the message. It was that night that my husband said he felt a hard lump in my right breast. But I was in denial. I’ve had fibrous “lumps” before and besides I’d had stage 1 breast cancer 13 years ago in my left breast and have been clean every since. I had other things to do than revisit that scene.
Unfortunately there was no denying the x-rays and ultra sound screen presented after that second visit. Invasive ductile carcinoma, at least stage 2.
Next stop was a visit to the surgeon. I elected for a lumpectomy as it seemed it would take out the bad stuff and still leave me with something to fill my bra.
Surgery revealed that 12 of 14 lymph notes had cancer cells. An appointment was set with the medical oncologist and later with the radiology oncologist. A cat scan showed a couple of suspicious flecks elsewhere in my body, so meeting my new main doctor didn’t bring the best news. Best case scenario stage 3. The worst, 4th stage, or terminal.
With my daughter and husband with me, I thought I reacted rather well. No tears, no Oh My God, am I going to die remarks. Shock does wonderful things. Next came the Pet Scan which would zero in on those nasty “flecks” and reveal if they were simply artifacts or actual cancer.
Fortunately, the results were good. Stage 3, which means the cancer cells have migrated out of the original tumor and into the lymph nodes but no farther. That day I was euphoric. I had a chance. Within a day or so, relief spiraled into something more somber. My biggest fear was that I would suffer the horrendous nausea experienced after my first bout of chemo in 2000. My doctor assured me they would provide me with an arsenal of anti-nausea medications to prevent a recurrence. All I could do was pray they would work. Other than toothache, I can think of few things I dread more than vomiting.
But I now realize that a great blessing has come to me with an outpouring of love, encouragement, and prayers from family, friends, and colleagues. My daughter so newly widowed and in straightened circumstance, flew from Vermont, via Virginia, to spend 8 days with my husband and me. With Bill and Paige at my side, I was encouraged and supported. Ongoing concern, Reiki treatments, and offers of food from friends smoothed away many of my darker thoughts. It’s a beautiful thing to know that people genuinely care, that they are willing to write and send their healing energy to a friend in need, putting aside their own concerns to do so.
With renewed hope and strength, I’m actually getting back to writing on my current WIP, Emaline, and today I am breaking the blog barrier. Life does go on. Thank you all for being my companions and guides along this new trail.
When I wrote my farewell to 2011, I had no idea that a more painful goodbye was only days away. Because the loss of my daughter’s husband is still so close, I can only quote excerpts from the tribute composed by his children, parents, and siblings.
Carleton Harlow, born November 17th, 1952, son of David and Marge Harlow, passed away on January 6th, 2012 in Mt. Holly, Vermont. He married Paige Wilson-Kelly on April 20, 1984. He leaves behind his devoted wife and greatly loved children, Megan Harlow of Virginia, Kristance Harlow of the United Kingdom, and Joseph Harlow of Vermont.
Carl’s main passion and love was for his family. He was an avid outdoorsman who loved to fish. He will be remembered for his great sense of humor; he was always the funniest man in the room.
Whenever there is a family gathering, he will be missed, not only for his delicious barbecues and hilarious dance moves, but for his selfless, loving presence. Wherever there is a stream and fish to be caught, a clear night with stars to gaze at, or a moment that calls for a laugh, we will remember
Carleton Harlow, my beloved son-in-law, passed away on Friday, January 6. I will be in Vermont with my daughter and her family until the end of the month. Thanks to those friends, family members, and colleagues who have sent me their sympathy and condolences.