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Posts Tagged ‘Acceptance’

People told me an array of stories as I entered the next phase of treatment most of which featured radiation as a villain that distorted cell structure, fried skin, and enervated the spirit, so I didn’t want to proceed and challenged my doctors’ protocol.

“If the chemo killed all those fast splitting systemic cells, why do I have to have radiation?” I begged.

Their responses didn’t satisfy me. They may have thoroughly explained the scientific or biological or statistical yada yada; but all I heard was a familiar “because I said so, that’s why, kid.” So my inner teenager slammed her bedroom door shut which terrified my inner child and, in turn, sent my fairly healthy inner parent into a tizzy.

As I’ve repeated throughout this blog, I needed to believe in the course of action I was taking in order to feel confident of success. I have not and I do not endorse a particular medical or alternative healing modality. To me, belief is key. I feel that I, and anyone making important choices, need to aline head, heart, and gut/soul; and that the process of alinement or at-one-ment is the way to true healing from this and probably all dis-ease. Which is to say that I wanted my belligerent inner teenager, quivering inner child, and flustered inner parent to reconcile on this matter of radiation.

My inner parent stood outside the locked bedroom door and reasoned with my inner teen, “the doctors must know what they’re talking about: they’re experts, all they do is treat breast cancer, they’ve seen thousands of women, they’ve been doing this for years.”

My inner teen ‘s response was to turn up the volume and shriek “Killing in the Name”.

My inner child clutched her blankey and sucked her thumb.

Inner parent threw up her hands, “Well, we have an appointment to meet the radiation oncologist today and we’re going whether you like it or not.” I told my selves to calm down – breathe – we didn’t need to make a decision today. Just for today, we were merely gathering information.

“Whatever.” The lock on the bedroom door clicked open and inner teenager, tight-lipped and still fuming, took inner child by the hand to the hospital to meet a new doctor.

Dr. Margaret Torrey, the radiation oncologist at Nyack Hospital, a branch of Columbia Presbyterian that is closer to my home, impressed me as very smart and very nice. She was patient with my questions and gave thorough explanations about why she believed radiation would be the optimum course for me, described the process, and the side effects. The primary message I took from that visit was that the road I had traveled thus far – surgeries, tests, chemo – statistically proves to be the most effective, that my care had been superb, and that the prognosis for no recurrence was great. In her educated opinion, radiation would seal that happy fate.

Inner teenager pumped a fist in the air, “YEAH,” inner child’s thumb popped out of her mouth and she jumped for joy, inner parent glowed with pride, and my whole self integrated in that moment. I determined that I would continue along the prescribed medical path. Of course, I intended to customize my experience though.

There was one story among the scary stories told me about radiation that did not have the same negative point of view. This story came from a friend who was grateful for radiation therapy not only for deleting his prostate cancer, but also because he learned how to meditate while undergoing treatment. He said that his Higher Power, whom he chose to call God, forced him to learn how to meditate by having him sit still for twenty minutes at the radiation clinic each day.

My life style had returned to busy as soon as I had recouped my energy after the summer of chemo, so the idea of a mandatory stillness in which I could meditate excited me. I decided to adopt this man’s attitude of gratitude, and to make the most of the two months of 5 blasts a week of radiation.

And, I intended to get creative in order to minimize and even eradicate those potential side effects.

(to be cont.) L.

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As I think back on that first Thursday on the 9th floor of the oncology unit of New York-Presbyterian/Columbia University Medical Center, I recall my husband and I huddled together anxious as immigrants in the Great Hall at Ellis Island. We sat amidst the others, pressed close together, clutching our belongings, staring at the door to the infusion room with hopes and fears tripping behind our dull gaze. The promise of a new life was on the horizon, but we had to get through the process first.

I had heard tales of what lay behind that door. There were chemo lounge chairs, I heard, in two sections of the hospital floor, an East and a West. The East was called the garden side, and the West was called the river side, and Lois, the nurse practitioner that gave me the lowdown on the 9th floor along with lists of instructions, told me that both sides had nice views. But I wanted the river views. I’ve lived and worked near the Hudson River for most of my adult years and that enormous force with its eddies in all directions soothes my soul. I was sure that the Universe would provide a Hudson River balm for me.

I was also told that a nurse would be assigned to each of us. Part of my infusion involved the gradual pumping of the Adriamycin into the IV which was performed by the nurse which meant that she would lavish some attention on me. I wanted a nice nurse. So, I stared at the door to the infusion room and studied the nurses that breezed in and out to find a kindly looking one and will her to be mine.

My husband, Reade, busied himself with the newfangled Green Mountain single serving K-cup coffee machine and tranced out to the ubiquitous CNN, whilst I practiced creative visualization to manifest the optimum infusion experience for me. I saw myself relaxing in a comfy chaise lounge in a secluded area, gazing at the meandering river out the window, holding the hand of a doting, capable, Earth-mother nurse in a glowing white frock.

The door swung open, a middle-aged bleached blond in a vibrant blue print pant suit stepped out. She looked at the index card in her hand, called, “KELLY,” and checked her fingernails while she waited for someone to respond.

“Yes,” we pounced out of our seats and scurried to meet her. I confirmed, “I’m Linda Kelly,” and extended my hand, “and your name is?”

Diane gave my finger tips a shake and lead us through the door. We followed. She turned left. Left was East, East was the garden side. My heart sank. Diane pointed to a chair in the center of the room, in front of the nurses’ station, the only chair without a privacy curtain, and told us that she’d be right there. I scanned the scene and recognized that all of the chairs were occupied with folks hooked up to IVs, and so took a few deep breaths to accept that my reality would be very different than my dreams.

The view through the window behind my chair was of another hospital wing that apparently had a plaza with a garden in it. The view from my chair was of the entire East side unit. I looked on all the people with varying stages of cancer – some bald, some not, some pale and thin, some not, some sleeping, some not – all with fluids & chemicals streaming into tubes plugged into ports in their chests or inserted into the veins in their arms;  plus I looked on all the busy nurses. There was nothing relaxing about this scene. And looking above the hub-bub of the unit to the window within view, there was the elongated sprawl of Manhatttan from 165th Street all the way to the financial tip which is awesome, but it’s not tranquilizing, particularly if you lived here when the Twin Towers were your downtown.

Diane came back with water and a little paper cup holding a pill that I was pleased to see. I had learned about Emend from Dr. Sheldon’s nurse practitioner who told me that she had unbearable nausea when she had chemo for breast cancer until given this support drug. The first dose of Emend had to be taken before chemo which is why I was happy to see that Diane got the word, so I took the Emend capsule and felt more at ease with the idea that my nurse, though not warm and fuzzy, might be capable of taking good care of me. I settled into my chair and watched as Diane rolled over an IV rack, got a big mug of ice chips which she instructed me to suck on throughout to help prevent mouth sores, got a few sacks of fluids for hydration as well as the chemo, and then rolled over a stool and sat down.

“Which arm?” she asked and gestured for me to extend the correct limb.

I gave her my left arm.

“Oh, no. You have really bad veins,” she said and commenced to rub and thump at my inner arm from crook of elbow to wrist while I nervously explained that I had a lymph node dissection on the right side, so my right arm was not an option…

“And besides,” I said, “my veins are just fine for me.” I felt like the little mouse that roared. So, empowered, I looked up to capture Diane’s eyes, and said,  “I’m sure that if anyone can find a good vein, you can. You do IVs all the time.”

Diane did manage to find a vein though she grumbled throughout about my need for a port. I did not feel it necessary to defend my choice to forgo a port given that I would only have four rounds of chemo, I merely asked her questions about her life and her family to try to turn the tide. Turned out she was having a tough time of it which she shared with me at length during the slow, gradual pumping of the Adriamycin into my vein, and I was able to feel some compassion for her marital difficulties and tough commute though I was delighted to have her be done.

Then for the next hour, while hooked up to the Cytoxan drip, I had a word with God about how screwed up the Divine Plan was, and tried to close my eyes to meditate and listen for a worthy explanation. But my eyes would not stay closed. Reade had stepped out for a bite to eat and I found myself looking around the room at the other patients. I saw the woman obviously bald beneath her scarf typing away on her laptop, apparently keeping up with business, as though infusions were mundane in her day, and the elderly gentleman looking tired and green being fed ice chips by his spritely silver-haired wife, and the elderly African-American woman reclining with her eyes closed while a young African-American boy, merely 10 or 11 years old, sat by holding her hand. The patience and tenderness of the boy impressed me, and warm, wet tears welled in my eyes and rolled down my cheeks, and then I started to cry from deep places. I cried for the pain of the needle in my arm and the fear of the disease that had me in a hospital on a beautiful summer day and the grief of missing the Twin Towers and my youth that had been spent there; and, as I wept, I realized that this pain was real and so important, so healing to express. And I knew that more than the tranquility of a private chaise and a tranquilizing river view, I needed to be in the center of this room where I could see other people to get in touch with the truth of my humanity.

(to be cont.)

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My father was a man of legends. As the stories go Richard (Dick) Haldane Sperry was:

  • A star sportsman who sacrificed his pro golf career for the sake of his family. Dick felt that the touring would be too hard on a young wife and multiple baby daughters, and, thus, quit despite the trophies on shelves and mantles that testified to his talent and the highlight moments of rubbing elbows with the greats such as introducing Arnold Palmer to his wife.
  • An up and coming business man. As a strong proponent of Dale Carnegie’s Secrets for Success, Dick quickly climbed the corporate ladder and won many friends and influenced people along the way. The stories told to my sisters and me portrayed our father as a leader among men. Dick clinched the deals and advanced others in their careers as was evident by the amount of gray flannel suits who insisted we call them Uncle. The man we called Grandpa was the president of the company that hired our father after his cancer was deemed inoperable. Legend has it that Dick took a risk to search for new employment, for more money and better insurance benefits for his family when he learned that he was going to die. The man we called Grandpa Johnson hired him based on Dick’s promise that he would increase profits by a certain percentage within the estimated two years that he had left to live. Grandpa and Grandma Johnson told us countless stories about our father’s bravery and gallantry, saying again and again that they “loved him like a son,” and, so, remained important in our lives long after our father’s death.
  • A tragic hero who battled a monster molecular melanoma with experimental treatments. In the early 60’s there was little information about cancer. The surgeon general just issued the first report on the connection between cigarette smoking and disease in 1964, and it wasn’t until 1966, the year my father died, that “Warning: cigarette smoking may be hazardous to your health” was printed on the side of the package. Although Dick was not a big smoker and quit when he determined that it cost too much money, he was diagnosed with skin cancer that had metastasized to the lungs at a time when cancer equaled death. There was no cure. So, as the story goes, he gave his body to science by signing on to work with a progressive Dr. Li of Nassau Hospital, Long Island as a guinea pig for cobalt treatments and a new “vaccine”.
  • A spiritual warrior with a strong faith in God. Our father’s faith was evidenced by our family’s daily prayer practices of grace before meals and kneeling before bed at night, as well as our weekly attendance at church, and by the Sunday school class Dick taught after he was diagnosed. Yet, the strongest piece of concrete proof we have of our father’s belief in God is the treatise on life that he wrote on his death-bed.

As I understand this story, the treatise entitled “What is the Use?” was dictated to a nurse after Dick came out of a long coma. Upon finishing the piece, he lapsed back into a coma and died six months later. My sisters and I believe that the writing is divinely inspired, that our father met with angels on the other side, and then returned to leave a legacy of divine guidance for us. The single page document of eight short paragraphs in a script-like typeface is framed and hanging in our homes as well as memorized and oft quoted by the four of us. It begins with a recognition that this effort will alarm Dick’s loved ones since the gesture to “summarize opinions on life” might imply that he’s quitting the battle, but he makes no apology for needing to “clearly express (his) view on living.”

God is love. (This is sure)” he tells us, and then proceeds to delineate the qualities of a “life (that) has been well lived.” After enumerating character traits to strive for such as purpose, daring, perseverance, focus, and self understanding, he concludes that “one (can) know the correct way to think and act” by studying the life of Jesus. “Understand His way and life will be a magnificent adventure.

Chiseled in our father’s rose-colored gravestone under Richard Haldane Sperry, 1933 – 1966, are the final words of his treatise: A Magnificent Adventure; and I do believe that was his experience. I need to believe that his words were inspired, that his life was Christ-like in its impact and brevity; and that all the legends of his wisdom, bravery, and generosity were true.

The last time I saw my father alive, he was frail in a white undershirt and boxer shorts, and in the thralls of a paralytic seizure. I discovered him. He was stiff as a plank, convulsing, and gurgling, “Marti,” in an attempt to call my mom for help. I fetched my mom and ran for help from our neighbors, then stood at a distance to watch the ambulance with its screeching red light take him away. The last image I have of my dad is of a slender, pale, and lifeless young man in a casket. I was eight. My sisters were six, five, and two. The legends, the heroic stories, are vital for breathing a powerful life into the father of our child minds.

As an adult, as a flawed human still striving for those estimable qualities, it has been equally important for me to meet a life-sized version of my father. The moments in therapy when I had insights into his humanity, the few hints at his fallibility dropped by my mom have helped to liberate me from larger-than-life expectations of myself; and, yet, for the most part, I’ve still relished the glowing eulogy of my father’s life story.

Then, in May 2009 in the thick of my healing journey, my mother’s birthday present for me was to meet me halfway for lunch. I drove an hour and a half from New York, she drove almost two hours from her home in central Connecticut, and we enjoyed a nutritious heart-to-heart conversation over large salads. It was the best birthday present ever, and, at the end of our precious time together, my mom gave me, among other gifts, a letter written by my father.

It took me a few days to find the right time and space, free of responsibilities, to read the letter as I was fully prepared to weep buckets; and I did weep, but I was also sobered by the gift. There, in a yellowed envelope addressed to C.V. (Grandpa) Johnson, were three pages of crude lined stationery. The handwriting was tight and forward slanting, the words evenly spaced and the lines double-spaced indicating the care the author took to be legible to the reader. The penmanship was imperfect, there were punctuation mistakes and misspellings, there were scribbled out errors and corrections. At first glance, it seemed written by a teenager or older child.

Upon reading, it became clear that the letter was written while Dick was in the hospital, awaiting the first injection of Dr. Li’s vaccine. The letter is a thank you note and begins: “What do you say to a man who has lifted you up when you are down and close to out? I know one thing for sure, I don’t have the words in my vocabulary to completely express the gratitude my Family and I feel for the helping hand.” As he believed that he would have had to “rely exclusively on strength of will to defeat the enemy within” if it were not for Grandpa Johnson.

There is no doubt in my mind that your help in my time of need has made it possible to defeat this cancer. That I will arise and walk out as a whole man. Ready, willing, and able to join in life’s larger wars. Confident in the fact that where there is a will there is a way.”

He goes on to tell how Dr. Li was in the night before to express confidence that the vaccine would work in his case; and then tells how the stay in the hospital gave him time to polish up his sales plan, and plan for the success of the sales program, how the treatments would be timed in such a manner that he would make the Chicago sales trip. “All in all, things are working out beautifully,” Dick writes with the power of his positive thinking. The letter is dated 9/16/65. Dick died a year later.

According to legend, my father had accepted his death sentence. So, it was so painful to read in his own words the extent to which he had suffered and struggled to live. It was so painful to empathize with his fear, to identify his fear as my own. I too have a strong faith and am willing to go to great lengths to heal and have a positive attitude in the face of strife. I too fear the “enemy within” me, and really want to live.

The gift from my mother: the words from beyond the grave written by the man who was my father, made me realize that my faith needed to grow to include an acceptance of death in order to truly be free.

Humbly,

L.

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