A Difficult Journey
By Carol Kretovich
Ginny was thirteen the year she began experiencing health issues. Up to that point she had always been a happy, energetic, and athletic child. Then she began complaining of not feeling well. She expressed being lethargic, exceptionally cold, feeling jittery, and had dark circles under her eyes. At first I thought she just did not get enough sleep. Ginny was an avid reader and many times would read under the covers with a flashlight until the wee hours of the morning. However she assured me she had not done this in quite some time.
The following day I scheduled an appointment for Ginny with the primary physician in our area. At her visit he reviewed her prior history, which only included removal of tonsils at age four, measles, and mumps, all prior to going to Kindergarten. He thought since she was so healthy her issues were not serious and probably related to the beginning of puberty. He decided to run some routine blood tests anyway to be sure. Ginny was instructed to keep a journal of how she felt on a daily basis and we were scheduled to return in two weeks.
When we returned, we were advised that Ginny’s blood showed she had Hosimotos Thyroiditis. The physician explained her symptoms were similar to an underactive thyroid. He took more blood and we were instructed to return again in two weeks.
The next visit we were informed her tests indicated Grave’s Disease which is similar to an overactive thyroid. He thought the results may be mismarked so he again took blood and scheduled us for another return visit. Once more the results indicated Hosimotos Thyroiditis so the physician was sure this diagnosis was correct. Ginny was prescribed medication and we were scheduled to return at regular intervals.
Ginny’s blood tests continued to be erratic but since she was feeling better I tried to ignore the inconsistency. Eventually Ginny’s tests were normal and she was removed from all medication. The entire episode made me suspicious and concerned. Ginny previously was so healthy these episodes were unsettling to me. I quietly evaluated her appearance and sleep habits maintaining my own journal. I had no choice but to believe the physician’s diagnosis. This was before the age of computers so research resources were not available to me. My only resource was a non-professional Merck Manual available at the library. It provided only limited information on these diseases.
The next time she became ill it was serious. Ginny was almost fifteen. Her leg turned blue, almost black and swelled to double the normal size. Later that night in the hospital we were told the cause was blood clots that needed to be dissolved to prevent hitting her heart or a possibly causing a stroke. The physician stated her chances were slim she would survive the night. Horror and disbelief overwhelmed me. However, I knew I needed to project a stoic mannerism in Ginny’s presence to avoid her from becoming hysterical. Early on I realized she would scrutinize my facial expressions to gage if the situation was serious. Ginny did survive the night. However this event was the beginning of an extremely long emotional journey. A journey I never expected or was prepared to take.
Many more years of health issues without a definite resolution to their cause plagued Ginny. Intermittently she experienced severe anemia, high fevers, extreme fatigue, swollen, stiff, and painful joints, hair loss, mouth ulcers, purple fingers, fainting spells, and excruciating chest pain. Although frightened beyond comprehension, I tried to calmly address each issue as it arose.
The severe anemia necessitated removal of her spleen to prevent loss of platelets. A steady level of platelets were preserved, but the surgery resulted in placing her in a three day coma and caused the physicians to once again advise she would not survive. To our elation she did survive without any impaired functionality.
She experienced high fevers resulting in extreme fatigue and her 108 degree temperature even when placed on an ice bed initiated another coma, however for an extended period. Physicians were baffled that she could survive the highest fever they ever experienced in that hospital. Once out of her extended coma she needed to re-learn normal everyday functions and activities (speaking, lifting up her head, holding a fork, feeding herself etc.). Assisting my grown daughter in re-learning these rudimentary functions caused me chest and back pains, which I realized was a physical expression of the sorrow I felt for her. I did not realize at the time I was grieving the loss of her health. Eventually I began listening to classical music on my ride home from the hospital. It was cathartic to my soul and provided the strength I required to carry on.
Fainting spells and excruciating chest pain indicated more serious problems. Numerous tests, x-rays, and physician visits pointed toward endocarditis and additional blood clots. Blood thinners and anti-inflammatory drugs were administered. Weekly x-rays and blood tests were required to determine progression of her illness. Again the physician advised these occurrences were life threatening. Whenever I was given this information my body responded in pain. I knew I was unable to outwardly display my true emotions so my body responded with chest and back pain.
Less severe issues such as mouth ulcers and purple fingers were handled at home using minor medications and hot compresses. I was grateful for these minor events. They enabled me to feel useful as if I was actually the one caring for her.
Previous years of health issues culminated into the most serious health issue of all. Ginny’s cousin Kris distraught by Ginny’s illness, surprised her with a two day shore excursion. It would be a wonderful diversion and allow them to spend some quality time together. Ginny enjoyed the trip immensely, however she arrived home seriously ill. Her skin was pale, almost white with dark blue circles under her eyes. She was severely lethargic. Her exhaustion was completely debilitating. Ginny went to bed that night and after twenty hours was still sleeping. Concerned I continually went in her room and placed my finger under her nose to determine if she was still breathing. My attempts to rouse her were unsuccessful. Once again Ginny was in a comatose state.
I was paralyzed with fear and doubled over with chest and stomach pains. Alternately I was first blanketed with numbness, then panic stricken and began to shake uncontrollably. This is it I thought. Her time is here. I lost my cool when I telephoned our primary physician. I was screaming at him – enough is enough! Find someone that understands the necessary treatment to cure her – and fast!!
Bring her into the office for an examination. Maybe she just has the flu.
The flu in May I screamed! I really didn’t believe him but did not want to resist in case there was a chance something could be done. Due to her comatose state I literally needed someone to assist me in carrying her from her bed to the car and into his office.
After our primary physician examined Ginny he nonchalantly stated “these symptoms are all part of the disease for which I have been treating her”.
What disease I screamed! I was never provided a diagnosis. Why wasn’t this explained to me?
His response was to inform me he believed her diagnosis was possibility SLE (Systemic Lupus Erythematosus) and there was no cure.
So why did you not recommend a specialist? I was so furious I could hardly control my anger. All this time wasted. Maybe there is a cure? Thoroughly irritated, he wrote a name of a Rheumatologist on his prescription pad and threw it at me.
This physician is at Temple University Hospital. You can try him but he will not be able to do any more for her than I have done.
I contacted the Temple Hospital physician’s office and after twenty minutes of trying to tell my story without becoming too upset, we were provided an emergency appointment. This physician was our gift from God. Upon the first examination he quickly determined Ginny was in kidney failure. Immediately she was prescribed a strong medication for Lupus and was scheduled for six sessions of chemotherapy to eliminate the inflammation that ravaged her body and hopefully “kick-start” her kidneys into functioning.
There were numerous ups and downs related to Ginny’s complex illness and she was ill for a very long time. Unfortunately if our primary physician did not attempt medical care for a disease he was unprepared, Ginny would most likely still be with us. Only God knows that for sure. Although her road was difficult, the care by our fabulous Rheumatologist and Nephrologist at Temple University Hospital did enable us to enjoy many additional years with Ginny we would not otherwise had.
Ginny was under the care of a “Top Doc” Rheumatologist and “Top Doc” Nephrologist at Temple. She went through two more series of six sessions of chemotherapy. These were all before the medication to prevent nausea and vomiting was on the market. Watching your child regardless of age, turn a deep shade of grey and experience the crippling nausea and constant vomiting after she was administered chemotherapy is definitely a sight a mother should be spared. Each treatment involved an overnight hospital accommodation. I never left her side. It broke my heart to watch her in so much discomfort. I felt helpless, exhausted, angry, and wanted to weep endlessly. Even when my emotional resources were depleted I tried my best to always smile and be upbeat for her.
Chemotherapy was not the only horrid treatment Ginny was required to endure. There were endless blood tests, monthly iron and blood transfusions, bone marrow aspirations, kidney biopsies, and diagnostic testing such as EEG”s Uultrasounds, CT Scans, X-Rays, and MRI’s.
She was on hemodialysis twice for six months each and home dialysis once. For Lupus Nephritis patients, the hemodialysis procedure of blood removal, cleansing, and re-entry is almost as drastic on the body as chemotherapy. The five hours each day for three days each week she received hemodialysis was emotional. It was not comfortable for her and broke my heart watching her go through it. I had now become a cheerleader for her emotions. I needed to find new books, magazines, and games to pass the time. Although I have never been known to be anything but a serious person, I tried as hard as possible to locate jokes to make us laugh. Even if the joke was not funny, my stumbling trying to tell it made it funny. Her hardy laugh satisfied my insecurity.
During the entire journey my mind was engrossed with thoughts of Ginny’s ultimate demise. Every time she became more seriously ill or was rushed into the hospital I thought it was the end. The anticipation of this possibility prompted fear, anxiety, and uncontrollable sadness for me. However I felt unable to express it in Ginny’s presence. I thought I needed to maintain a demeanor of strength and placidity thrusting my emotions under the surface. These emotions I would learn later in life, are better known as “anticipatory grief” (beginning of the end). Every day I wondered if this would be the day her luck ran out and I would lose my precious daughter.
Initially I would cry on the drive to and from the hospital or work, then pull myself together and display my stoic demeanor. Ginny was ill for such an extended period and I had pushed these emotions and tears so far under the surface, I rarely felt happiness or sorrow. Deadpan was a better description of my demeanor. She was ill for such a long time I became totally detached from my emotions.
When the terrible day finally came and the physician at the hospital told us she was gone, my knees went limp and I fell into Steve’s arms. An intense pain developed in my chest. The severity was like none I have ever known and will never know again. My heart breaking, I began to sob uncontrollably. Steve stared at me in dismay. Not only was the news upsetting but this stoic wife he had known for thirty five years had never once under any circumstance cried or even shed a tear in public, let alone sob. Now I was sobbing in public, a heart-wrenching sob beyond my control. I had melted into a sea of tears. Perplexed and in shock he had no idea what to do, so he just held me.
Although Ginny’s illness was serious I never truly believed for one minute that she would not survive. I was a religious person and led a good life. I maintained a strong belief if I prayed hard enough God would grant us a miracle and Ginny would one day be healthy again. What happened? Something went wrong. Where was our miracle? Looking back on it now I think Ginny was more aware of her limited existence than I. One day during a serious episode I jumped into my cheerleader mode when I saw the fright on her face. Rah, Rah you will beat this one as you have before. I was definitely in denial. She looked up at me with the saddest eyes and said “Mom, wake up and smell the roses”.
Although all the years of Ginny’s illness and my two bouts of cancer were difficult, my journey of grief was the most lengthy and most difficult journey of all.
Ginny passed on Monday of Holy Week. The Catholics do not bury their dead during Holy Week so were required to wait an entire week for the viewing and funeral. It was a most horrendous week. People in and out of our house continually – all day, every day. Then there were constant deliveries of flowers, plants, fruit, and food. The doorbell rang every half hour. I thought I would lose my mind. I appreciated the thoughtfulness but I just wanted some peace and quiet. My nerves were raw. I wanted everyone gone and the chaos to end so I could crawl into a corner and grieve alone.
Then there was the church – the infamous unbending, uncompassionate Catholic Church. Twelve years of catholic school followed by catholic college and they would not allow her to have a personalized funeral mass. I wanted to include prayers from school and songs from her choir. This was unacceptable to the pastor. Doesn’t anyone have compassion for others anymore? Especially priests? It seemed I went from not having any emotions to feeling anger constantly. Anger toward God, anger toward the religion, and anger toward the pastor and church.
Finally it was Easter Monday morning. We went to the funeral parlor to examine her body. Using her personal clothes, make-up, and a picture provided to him, the funeral director attempted to make her look like her normal appearance. However with all the saline solution pumped into her in the hospital to keep her alive, her face and body were bloated and totally distorted. After our examination and sincere discussion, Steve and I made the decision to have a closed casket. During all her years of illness, whenever Ginny went through chemotherapy or was on high doses of medicine that would distort her appearance, she would isolate herself and hibernate in the house until once again regained her normal appearance. Keeping these situations in mind, Steve and I felt it would dishonor her to have an open casket.
My parents were furious. They vehemently protested our decision and felt they had the right to do so. We remained firm. For Ginny’s sake it would be a closed casket. I was irritated and now was developing a severe migraine headache. Did anyone know how painful this whole situation was for Steve and me? We lost the two most precious people in our lives, first our granddaughter, then thirteen days later Ginny. Why was there no concern or compassion for us?
I kept my composure through the viewing, mass, and graveside service. My stoic demeanor did not fail me. I was glad it was over and everyone was going home. Steve and I did not rest well the night after the funeral. The grief and emptiness was overwhelming. The pain in my chest was like a knife slashing through me. Ache and sorrow devoured my entire body. I wanted someone to tell me she was not gone. I wanted her back. Continually I prayed to God to let me see her and hold her just one more time.
As I laid on the bed staring at the ceiling, the events and sorrow surrounding her illnesses played in my mind. I prayed my excruciating chest pain would subside. I wondered how I would be able to move on without her. She was my precious daughter, support person, confidant, and best friend. Where would I go from here?
Finally as the sun was peaking over the horizon and shining in my room, I decided to “suck it up” and get moving. I gave myself crying time at the hospital and at the funeral mass. Now I needed to move on! Keeping busy would be the best therapy, or so I thought.
With coffee in hand I sat at my kitchen table and started drafting a list of the things I needed to complete. Ginny did not own much so there were not many people to contact. Periodically I realized I was staring in space, not working on the list at all. By the time Steve came down for coffee, the list was finished and I had started reviewing all the Mass cards, letters, and notes. By week-end most items were completed and thank you cards mailed. Steve and I attempted try to get back to our normal routine.
My approach to grieving was so much different than his. I secretly cried on the ride to and from work but pulled myself together before arriving in the work place and home. Except for the two situations described above, no one had ever seen me get upset or cry and I wasn’t going to start it now.
My drive to work was approximately one hour. I filled the hours to and from work with books on tape. They consisted of books on death, dying, bereavement, resilience, the afterlife, and stories written by parents who had lost children. Whenever I experienced difficulties in my life, I went directly to books to help find answers and this time was not different. I needed to understand this excruciating pain and sorrow. I believed if I understood it, it would go away and I needed it gone.
I attended a week-long conference usually attended by the medical field on all aspects of death, dying, and bereavement. I went to psychics. I joined a Compassionate Friends group (this is a group for people who have lost children) and attended their conference. I tried to resolve my grief issues mentally by attempting to understand them. I thought if I understood the loss I could conquer the hurt. I addressed this grief thing like a college course – study it, understand it, learn it, conquer it, then it’s gone. Well to say the least, my process did not work. It was more than one year later and Steve and I were still drifting. I had learned about the stages of grief and thought the process would be to move from one to another. Steve and I did not move uniformly through these stages. It was more like up one, down two, up two, down two etc. I didn’t understand it but I kept plugging along.
Steve’s physician was having difficulty trying to get his blood pressure under control. He had donated a kidney to Ginny and was on the verge of acquiring kidney disease, which also elevates blood pressure. He was not having much luck losing the weight he gained and was still feeling malaise and sadness. His physician suggested he see a bereavement counselor. Since I thought I was doing so well I boldly volunteered to go with him.
Bereavement counseling was difficult at first. Neither Steve nor I were accustomed to discussing our problems. However our counselor was persistent at drawing out feelings. We learned that our grief was complicated. We were grieving the loss of a daughter and granddaughter, all while addressing the grief associated with her illness. Her illness was not only a loss of her youth and health but the 24/7 care she needed prevented us from establishing a social circle and support team. Steve and I were it – mother, father, nurse, caregiver, companion, cook, and friend. We both worked a sixty hour work week then came home, prepared special meals, and provided our uneducated care. Medical costs drained our resources so we were unable to hire a nurse in serious situations. These were the times Steve and I shifted our work schedules to ensure one of us was always with her. Most nights I slept sitting on her floor with my arms and head on the edge of her bed. To prevent airborne germs and illnesses from infiltrating her porta Cath strict sanitation was needed. It required scrubbing and disinfecting her bedroom and bathroom top to bottom every day. Steve was diligent in keeping up with this effort. He cleaned, I cooked and nursed.
Although successful at hiding from Ginny the grief we felt was about her illness, after her passing we needed to address this issue in counseling. Steve was more in touch with his feelings. I had pushed mine so far under the surface I didn’t think it possible to retrieve them.
His counseling was much shorter than mine. My stoic personality never allowed me to feel from the heart. I have always resolved issues with my head. This does not work well when addressing grief. Resolving issues emotionally was always difficult for me. I was chipping away at the issues little by little in counseling. This was a lengthy process. Just when I felt I had accomplished a lot, along came mother’s day, Ginny’s birthday, my birthday etc. and back to the bottom I fell. As I repeated the process, each attempt was slightly easier than the last.
Still the process was so slow I was losing patience. Steve had urged me for years to write about my life, which he always felt was difficult. I agreed to write, not about me but about Ginny so I enrolled in a Memoir Writing class with the goal of writing a book about Ginny. During her illness she would always tell me she didn’t want to be forgotten when she passed so the memoir class would be most appropriate.
I have found success in writing. Each paper or article I write involves deep thought, examination of both sad and wonderful memories, plus my ability to expel my emotions to paper. The stories are now neatly stored in a binder with more added each week. Maybe someday they will graduate into a book.
Carol Kretovich is a retired finance, technical, and managerial professional. As a lost soul in retirement I searched for a new purpose in life. My goal in writing memoir was to tell the story of my daughter’s life and illness. In doing so I have found my new identity and have resolved personal issues with her death.