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Patient Story |
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Suess A Karlsson Bowie, TX United States female Living with CLL for 3 years, 11 months Age: 47 DREAMING DREAMS WHILE SLEEPING WITH CANCER Some days require more work than others because life’s not always fair. A large building season for me originated on October 19, 2006 and continues on today. Groggily getting ready for work in the early morning revealed something appearing very wrong with my left armpit. Bulky lumps created curiosity but not yet alarm. Not there or not noticed on Oct. the 18th, the bumpily raised surface of my armpit now demanded attention. I interrupted my shaving husband, who is a qualified physician assistant and holds a Master’s Degree in Emergency Medicine. Suspecting only the beginnings of a harmless infection, he reassured me to keep on “eye on it”, watch for fever, and call him at his Emergency Department office if necessary. Satisfied, we kissed and left for our respective offices, not realizing that kiss would be the beginning of the last B. C. days. Life Before Cancer. Every day of life soon thereafter, would be “a.c.” or life After Cancer. At 43 years of age, I surprisingly had little personal acquaintance with or knowledge of cancer. Very few friends or relatives had battled it near me. Fewer still had died from its invasion. Knowing cancer only from a far, far distance, I never gave it a nodding glance of recognition. The next morning, my lumps and I went through the same motions of the morning. The first part of that afternoon found my hand in extreme pain and I was unable to keep my arm down at my side. The lump was now an intruder and making my life inconvenient. Irritated at this thing in my body, I called my husband from his ER duties and he advised me to go to our primary care doc for probable antibiotics. At the medical clinic, absolutely nothing worrisome crossed my mind. The routine procedures of weight and blood pressure, of greeting acquaintances from town and changing into a formless scratchy examination gown seemed meaningless. When our doctor showed up, nothing worrisome crossed my mind. Always a tinge of embarrassment lingers within me by the physical exams required of physicians but nothing insurmountable. Only when he declared he needed an additional exam from a surgical collogue did a trickle of worry originate. Only when the surgeon, revealed his desire for a biopsy did a dribble of uneasiness begin. Only when they decided that I should fast that evening and meet them on the operating table the very next morning, did the staggering numbing reality of what might be, jolt my mind. Yet, common sense raged around the corners of my unbelieving mind. Not knowing anything conclusive, not having the black and white results of blood tests and not trusting anyone’s suspicions, no matter how educated or initialed, the weekend was spent nursing a large incision under my arm and peppering my husband for insubstantial answers. Miraculously, waiting through the long dull hours of the weekend didn’t kill me. Fortunate, because Monday morning, found my head and my heart flat lined and stopped while my ears danced around a variety of foreign words. Each individual foreign word had the identical definition Cancer. CANcer. CanCER. CaNcEr. cANCEr. CanceR. CANCER. My mind saw the words, written as if on a large whiteboard and oddly enough, each glance at that white board brought overwhelming horrendous waves of nausea. My literal thought as my husband and my doctors talked of oncologists, and oncology centers and treatments and tests and appointments was a reverberating “WHAT THE HELL?” I may have whispered it tenderly or silently, muttered it under my breath barely audible or screamed it violently through adrenaline, of that, I have no memory. Life was now officially, “AC”. Medical doctors “practice” medicine because it is ambiguous and vague. Renegade cells rebel. So often, I knew from my husbands practice, that there simply was no known reason. The “whys” of life often times exist in solitude. Asking hard, heart breaking questions gives voice to the pressing need to know, but that is all. Much of life is lived without solid resolution. My journey to find peace without resolutions had begun. The next day a reluctant husband and even more reluctant wife made a slow travel one hour north of our home toward a regional oncology clinic. Fearful, shocked, numb, sleep deprived, angry, sad, and completely unsure, I cried. As I entered, I detached myself from my self and watched me sign in, talk to a receptionist named Kelly and sit down in a lobby chair and wait. Wait in cold silence. Wait with a plastered on smile. Wait for an unknown doctor to save my life. Hurry up and wait was the thoughtful conclusion. I pondered. Hurry up and wait. The next seven days ceased any tranquility. Multiple needle sticks, blood tests, a bone marrow biopsy, a MRI, and a CAT scan, replaced a birthday celebration for my husband, usual days at work, normal walks in the evening and routine fall chores. The results of all those pokes and prods cumulated in a formal diagnosis and strategic plan of action. Written on cancer’s nametag at the next “meet and greet” session in my oncologists office was chronic lymphatic lymphoma /small lymphatic leukemia, stage 4. The diagnosis of CLL/SLL ushered me into a new camaraderie with more than 17,000 other Americans in 2006 who received the same diagnosis. The details and the full discovery of cancer’s arrival during that initial meet and greet session re-defined the borders of my body. My cancer had originated, I learned, nearly two years prior, from a solo rebel lymph node that refused to die on schedule. The mutated cell with his transformed offspring then traveled via the blood stream to tarnish the bone marrow. The entire lymph node system above my abdomen was mixed up with this trespasser. Because the cancer had also gained entrance to my liver and spleen, the fairly unobtrusive stages of 1 2 and 3 of CLL/SLL were bypassed and we trekked straight to Stage 4...the stage where chemotherapy makes a grand appearance. Chronic lymphocytic lymphoma and small lymphatic leukemia are treated as the same disease with two points of origin. Basically two points on the same line, CLL develops through the lymphatic system and SLL thru the bone marrow. When they are complete in their initial contact; their appearance results in swollen lymph nodes, increased infections, fatigue, extra itchy skin, night sweats and poor healing. I had none of these symptoms except for that traitor node under my arm just a few days earlier. In order for chemotherapy to have the best possible vantage point over the cancer, I needed yet another surgery to install a circular disc in an artery in my upper chest. This infusion port would become my newest and closest friend. A round, semi-permanent apparatus directly under the skin would allow oncology nurses to stick I.V. needles to push, pour and inject highly caustic medicines designed to kill this trespasser threatening to settle down inside. This portal was surgically installed on Oct 31, 2006 and on November 6, the first anti-poison was delivered. That first day of my first round of chemo is blurry and hazy in my memory. I knew I had now fully arrived into Cancer’s world. Yet with the introduction of chemo, I also stood in the realm of renewal. Killing cancerous cells was the purpose of chemo. Allowing healthy cells to reign was the strategy. Hating that cancer demanded I give my body over to the care of strangers and being a very young female victim of CLL (average patient with CLL is male and over 65 years old) fueled my anger and resolve to dream dreams while living with cancer. To say the next 5 months passed uneventful would be false. But pass they did. The months between November and my last chemo treatment in March 2007 ran together. Bordered by fear and faith on the one side with anger and love on the other, my life blurred…....HAVING VERY LOVING AND CONCERNED RELATIVES COME AND STAY, MY OLDEST SON’S FIRST FALL AT COLLEGE, THANKSGIVING CELEBRATIONS, MY HIGH SCHOOL SON’S FOOTBALL AND THEN, BASKETBALL GAMES, FAMILY DINNERS, SWEET TELEPHONE CALLS FROM LONG LOST FRIENDS, RENEWED ATTEMPTS TO RECONNECT WITH EXTENDED FAMILY, MY DAUGHTER’S JUNIOR HIGH GIRL SCOUTS MEETING, STEROID INDUCED WEIGHT GAIN, EMOTIONAL FRAGILITY, ENJOYING MY ELDERLY PARENTS, VISITING THE PAST & TRYING TO MAKE AMENDS, FEAR TOSSED NIGHTS THAT LASTED AN ETERNITY AND LAUGHTER FILLED DAYS SILENCED PREMATURELY, FATIGUE COMING IN AND THREATENING TO STAY, LOSING MY ABILITY TO TASTE FOOD, CONTINUING TO WORK WITH THE ELDERLY, ENTERING MEDICINE INDUCED MENOPAUSE, MAKING NEW FRIENDS, NIGHT SWEATS, MOUTH SORES, AND THE THINNING OF MY HAIR, CHRISTMAS JOYS, NEW YEARS HOPES, AND A VALENTINES ROMANCE WITH MY HUSBAND ….These events comprised life between the chemo treatments that lasted 4 days a week every 3 weeks for 5 months. Blood work and scans became routine. The familiar infusa-port remains my “best friend forever“. The cancer felt the fury of the medicine and retreated into remission. Maintenance chemo, as a reinforcement, is called in every 6 months for a month to remind CLL to not to return. Maintenance chemo will be around observing for at least the next 2 years of my life. Any attempted re-appearance of CLL/SLL will be met head on with more chemotherapy among other possible stringent treatments. While full remission is always the goal, the doctor’s tell me that CLL/SLL is treatable but not curable. Living with a terminal illness seems a contradiction. But a contradiction often times leads to growth. The paradox of living and dying simultaneously reaches out to me. While life after cancer holds vague similarities to my previous life, startling differences appear. Choosing to live presently in the moment and not stuck in a pointless rut, frees me to the embrace minutes, days and weeks. As I began to dream about dying, determination to live infused my thoughts. What kind of life did I want? Not content to just ask the age old question of “how then should I live?”, I desired to resound the answers. I determined early on that my only option was living with this cancer. I was not dying with this cancer. I told myself this often and out loud where my fears could hear too. Anyone who wanted to listen, I told as well. A typical “how are you today?” from someone who knew of my battle, usually resulted in my answer of “Good, I am living with this cancer, not dying with it, ya know?” A smile and quick hug and I would be on my way. I begin to decide what I wanted to do with my life. Who I wanted to see. Where I wanted to go. How I wanted to live. At 44, with 3 teenagers, and my husband of almost 25 years, I am living proof that you can survive cancer. Today, I have started my own business that I always wanted but was afraid to begin. I have release some old hurts and let go of un- forgiveness. I am in the process of living with as few regrets as possible. Now, life after cancer, I make decisions for my life based on the peace I have within, not the obligations I feel from the outside. When someone says, “hey do you wanna…?” Every possible time I can, I answer “sure, why not?” I created an office at our house and finally, am writing. Making memories for me and for my family and friends is very high on my list of activities. Living each day is the goal of life. Truth be told, living some days is still better than others…easier than other days…more meaningful than others. But life “A.C.” means more than life “B.C.” I know we all die and that the circle of life encompasses all humanity. I know that the probability is, I might die earlier than most. But for now, I am so invested and involved with the joyous job of living I don’t have time to dwell on that. I am too busy dreaming dreams while living with cancer. |
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