No. This isn't an article about sympathy and pandering for hand holding. We in the family know how to support each other through anything when it comes to Patricia. It is getting everyone to cope that is the issue.
In 1957 an infant daugther was born to Thomas and Grace Zambo of Olyphant, Pennsylvania. She would be the second child of four. The third would be lost to miscarriage. All the children were daughters in a Middle Class household where 'status' was valued by their mother and love was valued by their father. Due to those extremes a war was waged in the heart of their children to please their father with their mother as the gatekeeper to his approval. He knew little of this horrible game until far to late to save his second child from her fate.
Patricia knew how to get attention. From the time she was born she was a handful. There was no feeding her commercial formulas and in 1957 it wasn't fashionable to breastfeed. As a consequence she was prepared small formulation with farina, strained to perfection and fed from a bottle that had seen sixty nipples percisely developed to find the one 'correct' size hole that would allow her father's household to return to 'normal' with a child that was not in distress eveytime she ate. Pat would grow up with the rest of her piers and siblings fairly normally achieving better than average grades in school with conditions set for an adolescent to perform to better than above average standards calling her successful on all fronts of accomplishments.
That desire to please lead her to being a member of the Manville High School Drill Team. Perhaps some might remember Manville, New Jersey. It was the home base for Johns Manville, the Asbestos Capital of the World. As a matter of fact the last time I was in their public library a rock sits underglass stating "Manville , The Asbestos Capital of the World." Amazing. A material as deadly as that valued to that extreme. I wonder if Saudi Arabia puts containers of crude under glass in their public libraries.
[Off subject for a second, is anyone contemplating the public's safety when the Greenland Ice cracks and slides in the Atlantic? Or is that going to be a complete surprise as well so that Mr. Joshua B. Bolten, Bush's new Chief can then send FEMA to the entire Atlantic Seaboard to declare it a disaster area and find the hero status in all that occurs of a president completely negligent of the dangers of Global Warming. Do I then simply say "I told you so, again." from 500 miles inland? The carpets in the Oval Office must be lumpy and getting lumpier by the minute for all the pertinent issues needing attention that is currently swept under them.]
Back to Patricia.....
Patricia would have many boyfriends much to her mother's delight and father's frustration. She would pursue tennis as an athlete while her older sister found horsemanship more interesting and her macho younger sister would see baseball's pitching and catching more to her liking.
Patricia would go to college. No surprise there. The institution 'of choice' for Patricia was "Rider University" with a Bachelor of Degree in Business. The university has it's substantial music programs in Princeton Proper. Needless to say Patricia was liked among her piers and she thought well of herself. She would go on to graduate in a timely fashion and was hired into the Somerset County, Office of the Aging as their accountant and all around great person. The office did not have an overwhelming budget and Pat liked the 'idea' that martyrdom would lead to bigger and better things and surely it did. After two years of employ she would be hired by AT&T and in a short period of time advance into their International Division working out of Morristown, New Jersey. She did very well for herself. Her salary there was substantial for a young woman.
While, working as a martyr at The Office of the Aging she took up a part time second job as a hostess at the Holiday Inn on Route 22 highway. At that time it was the third most deadly highway in the country. Odd, isn't it, that residents of an area keep up with 'Top Ten of this" or "Worst Top Ten of that." Avoidance of disaster was an occupation in Somerset County, New Jersey. She was working one evening when a young man approached her and asked her on a date. She said, "No." He returned a second night and asked again. She politely said, "No, it is policy we don't date customers." He returned a third night with the Manager and asked her if she would go on a date with him. The Manager stated there would be no ill effects if she said yes, but, that was not a requirement to keep her job either. She said, "Yes." That young man, in time, would become her spouse.
He was and is a great man. He is accomplished and the two together could do anything they darn well pleased in the world by simply writing a check. Their combined salaries bought a gorgeous home away from the maddening crowd on "Jenny Jump Mountain" not far from Hope, New Jersey with a more than sufficient public school not far from their front door. It was hard to tell what the neighbors were doing as the trees were so thick on their property that sunlight was an infrequent visitor. They didn't have a 'deck' so much as an attic study with a sun-roof window. The trees were so thick there was concern nearly immediately for the house regarding infestation of any type of home devouring insect larvae and to that end a silvaculturist was called. The Professional of the moment stated he would mark whatever trees he felt he needed to cut down and call the next Professional of the Moment to cut them down.
Indeed.
There was to be about thirty trees cut down. Mr. Wonderful, and he was, stayed home from work to oversee the operation and after the eight tree was felled he could not stand the sound of the buzz saws any longer and cancelled the rest of the cutting as he stated, "The sunlight on the house seemed to be to his liking." The rest of the cutting was stopped, the sacrificial lambs carted away, landscaping took their place and contemplation as to the destruction was made short work of that day when his bride arrived home. He cancelled his week of home cartaking and returned to his work the next day. He was right. The house never needed that much sun on it.
That in defines Mrs. Wonderful's life. She was destined for happiness even if no happiness was to be found. They were great with each other and there was no 'status quo' ideologies or 'mind think' or genderization of roles in the family. They were a couple ready to take on the world but little did they know the world they were taking on would be microscopic and threatening in a far different way than anyone could anticipate and especially at such an early age in life.
After a few years of marriage, Patricia's spouse would seek employment elsewhere. He literally could write his own ticket. After leaving a job in New Jersey to work in Canton, Ohio, we would come to realize the contracts in New Jersey would follow him. Affectionately the families would call them the "Mr. Wonderful Contracts" because they were government issued and required his talent. Naturally, any subsequent job he worked would be along the same lines and the companies that would come to hire him 'anticipated' the work he previously did would accompany him. It did. Mr. Wonderful had his life mapped out before him. It was quite a revelation.
He and Patricia would be treated royally with a residence in a hotel for a month until they found a 'place to live.' Rather than buying a house they decided to build their own on a plush 17 acre estate. No sunlight issues, of course. So, in anticipation of working with 'the architect' next they rented a very modest two bedroom apartment. No children yet. It wasn't time after all, they didn't even have a home to bring them into with their own room. Yes, they were Roman Catholic and still are and attend church weekly. Patricia was not returning to AT&T International as there was no office for her to transfer into and she would take her time finding a place and a venue for her talents outside the home. No genderinzing rolls here, of course.
There would be three months of residency in Ohio before Patricia would be troubled by blurred vision. As a rule, both she and I would seek optomologists rather than optomitrists to perscribe eyesight needs. It seemed to work better for us that way. I am not sure why, except an MD was more successful at providing a perscription to eyeglasses or contacts that didn't need replacing except once a year. That isn't true of others, but, it was of us. So, while everyone was getting great bargains we were getting great eyecare to fill our needs.
Patricia made an appointment for an optomologist locally to have her persciption updated. He stated there was bilateral infammation of her optic nerves and before he could provide any changes to her perscription she needed to be seen by a neurologist. She went to a neurologist and he did a CAT Scan. CT Scans were state of the art at the time. MRIs would be available about a year or so later. This was 1985.
The scan revealed a tumor just above the Pineal Gland and a biopsy was needed. In humans, the Pineal Gland secretes high amounts Melatonin in children. It shrinks at puberty. There is little information outside of Wikipedia regarding this gland. It is little understood which speaks to the lack of focus in understanding childhood metabolism. There is a lot of 'mysticism' surrounding this gland actually. At any rate, it appears to me that this gland is a hormonal support to children until they enter puberty and it ceases to function as the secondary sexual development of an individual begins. It is my feeling that perhaps something went array during that point in time when it began to lay dormant that this slow growing astrocytoma in a female started. This tumor is normally found at age 11 or so in males. It seems linked to testosterone and we all know that women have lower levels of testosterone which would explain the slow growth of this tumor.
continued ...
Saturday, April 22, 2006
The need to understand was incredible. The building project would be put on hold and forever for this couple. Mr. Wonderful realizing what he was all about was supported by his brother to 'return home.' No. Not to New Jersey, but, New England. His brother also knew full well what he was all about. This was a family of character. They were built from the ground up and Mr. Wonderful would occassionally tell tales of his childhood to Patricia. She especially enjoyed the story about his newspaper route and being chased by moose from time to time in the backwoods of Maine.
He followed his brother's wishes to return nearer to family and moved to Derry, New Hampshire while taking a position in Tewksbury, Massachusetts. Like I said, "The Mr. Wonderful Contracts" would follow. He is now supervisor over an entire division. He would again marry many, many years later a woman he had worked with and still does. We'll get to all that. As I said, Patricia tends to like a martyr status. Again, the house was perfect but this time it was 'just newly built' on an acre and a half next to a strawberry field.
To illustrate the devotion Mr. Wonderful paid to his spouse he would bring home a dog they named "Marathon." Yes, he was a runner. Yes, he was/is a long distance runner. Yes, he ran in marathons. He completed them as well. The purpose for the dog was to bring dimension to Patricia's life. He wanted something to motivate her to live every day and puppies need lots of attention. She had no choice to be on a couch and become a vegetable for lack of will or desire to live. Never one day did I ever hear my sister state, "I'd rather be dead." She stated, "... but, who will take care of Marathon?"
He followed his brother's wishes to return nearer to family and moved to Derry, New Hampshire while taking a position in Tewksbury, Massachusetts. Like I said, "The Mr. Wonderful Contracts" would follow. He is now supervisor over an entire division. He would again marry many, many years later a woman he had worked with and still does. We'll get to all that. As I said, Patricia tends to like a martyr status. Again, the house was perfect but this time it was 'just newly built' on an acre and a half next to a strawberry field.
To illustrate the devotion Mr. Wonderful paid to his spouse he would bring home a dog they named "Marathon." Yes, he was a runner. Yes, he was/is a long distance runner. Yes, he ran in marathons. He completed them as well. The purpose for the dog was to bring dimension to Patricia's life. He wanted something to motivate her to live every day and puppies need lots of attention. She had no choice to be on a couch and become a vegetable for lack of will or desire to live. Never one day did I ever hear my sister state, "I'd rather be dead." She stated, "... but, who will take care of Marathon?"
I am a little ahead of myself here and we need to return to Ohio. I wanted to illustrate the extensive love that exists in this circumstance among the family and within this couple.
Ohio
Following all the excitement after the CT Scan an appointment was made with a neuro-surgeon. A biopsy was needed to know exactly what this tumor was since it was rarely found in women. The path for the surgery was minimally damaging across the board with every surgeon Patricia would subsequently come in contact. Following the surgery Patricia was in a coma for three days.
Upon wakening she was transferred to a general medical/surgical floor. You know the deal; if a patient 'qualifies' to be moved to a 'cheaper' room then do so immediately. Back then it was DRGs and today they call it efficiency. I couldn't figure out then and still can't figure out today what type of 'efficiency' this is. It sure isn't one designed by doctors and certainly not designed by patients. The USA has the worst medical model for nursing care in the world. It places patients in the care of a nurse patient ratio that is inappropriate for excellant care. Come on tell me I am wrong
After surgery, she now exhibited not blurred vision but double vision and a gait disorder (she had balance problems.) We knew there would be problems but we were all relieved to have her conscious at this point. An unfortunate accident happened in that Patricia tried to walk to the bathroom in the middle of her first night on a general floor; she feel and hit her head after a fairly fresh craniotomy. Scary word, craniotomy. Rightfully so. It is still debatable today whether 'the fall' lead to greater damage than before, but, that would not daught her recovery. This couple with the support of their families lived upto every word of praise and devotion to purpose anyone can muster. The projects Mr. Wonderful piloted were never disturbed and continued on schedule while he oversaw his wife's recovery. This was not out of greed but the 'idea' of purpose in our 'larger' self. We all just wanted what was best for Patricia. All she wanted was for Marathon to be looked after when she could not do it herself. Very simple equation. We respected the boundaries of need and sympathy all too well. It worked like a charm.
The next scare came when The Radiologist was called in. Dear God. Whatever happened to this MD to give him such lousy bedside manner is beyond me. He stated: "I have seen the results of the surgery and there is a series of treatments we can render, but, (Never speaking to Pat, The Victim, by this point.) your wife only has six months to live." Mr. Wonderful nearly died at that point and I do believe Patricia offered to call a cab. I don't know how they made it home but they did and the first phone call was to me.
After listening for nearly a half hour of trauma by Mr. Wonderful with Mrs. Wonderful on the extension clinging to some form of sanity, my very, very simple statement was: "Did you get a second opinion?" Click and the phone went dead.
Mr. Wonderful sent Patricia's biopsies to three separate (Not part of some kind of stupid health network that only manifests it's own incompetencies for any 'inefficient' venues within it.) and different medical centers. University of California at San Francisco , Mayo Clinic and The Cleveland Clinic. They concluded it was a very rare tumor for women. Researchers in San Fran found maybe 100 other cases of it. It was decided Patricia's care would go to Cleveland. She hated the idea, "...because you are treated like a number there." Lord knows, Patricia was not used to being treated like a number.
It was at The Cleveland Clinic in 1985 that Patricia came to understand how wonderful being treated like a number was when she fell under the care of Dr. Janet Bay. She stayed with her mother for thirty days in a hotel suite designed for such American princesses and received a complete series of radiation treatments. So much for six months of life.
New England. Massachusetts. "Pat is a tumor."
By the time this couple 'returned home' to New England her care was mostly centered around 'the shunt.' With the very first operation she a ventricular shunt was placed. These shunts are troublesome and can cause brain damage when they malfunction. A shunt placement is called a craniotomy as well. She sought treatment at The Lahey Clinic as she also went for scans of the tumor every six months.
There is a lot of precident regarding this case. Dr. Bay following the same surgical path as Patricia's previous surgeon, literally, biopsied this turmor herself and immediately viewed her slides under a microscope. The tumor could not be immediately excised as it would cause too much damage. Dr. Bay was faced with an issue. Before going into surgery, Dr. Bay knew the options for treatment based on the 'category' of tumors of astrocytoma . She knew if she classified this a Class One, the treatment option was repeated surgeries with any growth and a far higher potential of brain damage with each intervention. It was the sixth slide she that revealed a Class I - Class II tumor. Now, she could recommend radiation without compromising any standards of practice. Later she would recommend a new classification system called Low, Medium or High and at all 'classes' radiation would be an option. It is the radiation that nearly killed the tumor and saved Patty's life. Dr. Bay, in our family history, is the greatest neurosurgeon on Earth. She no longer is with the Cleveland Clinic exclusively, but, in private practice.
At The Lahey Clinic, the management style of a former team member of Dr. Bay's Cleveland service would conduct shunt revisions. Pat would have eleven shunt revisions with nearly no damage during her time in Ohio and Massachusetts. She eventually leaves New England and settles in North Carolina. Hospital of choice, Duke and managed by the head of neurosurgery, Dr. Friedman. Don't expect me to say kind things. Here, Patricia was less than a number and there was a good deal of damage done. There are several issues that play into this and it is sincerely tragic when 'power' enters the picture and a support system is destroyed. She no longer is treated at Duke Medical Center.
continued ...
The long and short of it is this. Pat did well while married to Mr. Wonderful. She enjoyed her life. They vacationed in places like Nova Scotia where she was amused by the 17% guest tax. The couple was still 'incredible' and Patty decided to conduct volunteer work rather than pursue a professional career. The marriage was secure and Marathon was all the dog they hoped he would be. Why then did the marriage not survive? They now is Patricia is such clinical straits? Both are excellant questions and surround Mr. Wonderful and his martyr spouse. He never let her down. He is more of a human being than any man I know. This is not about damaged goods on his part, it is the expectations of a woman who failed herself. Sorta. It's humanely debatable I suppose. Quite frankly, we all think Patricia was nuts for leaving Mr. Wonderful. He never left her through. Unfortunately.
Eventually, Marathon was to be replaced by a 'human family' element called a child. Patricia did not want to conceive a child for a chance her ovaries would have been damaged by the radiation. They placed themselves on four separate adoption lists. On a February morning a telephone call came asking the couple to come to an adoption office. They did and were told it would be within the next nine months they would receive a child. Their application was approved and they could anticiapte a familiy soon.
Eventually, Marathon was to be replaced by a 'human family' element called a child. Patricia did not want to conceive a child for a chance her ovaries would have been damaged by the radiation. They placed themselves on four separate adoption lists. On a February morning a telephone call came asking the couple to come to an adoption office. They did and were told it would be within the next nine months they would receive a child. Their application was approved and they could anticiapte a familiy soon.
See, Mr. Wonderful really loved her with all his heart. He was elated they had come through so much and would still have a family. Believe me there was no pressure by him to have a family. To him it was just the next step in life. The hurdles to be accomplished always seemed effortless to him. Not to her. She never returned to work because it was difficult facing the 'idea' of being handicapped and she was. She still had a gait disorder, although minimal, and she still has some impared vision but nothing that completely disabled her. She still required six month scans to track the existing tumor which the growth was very, very slow. By now the safer version of the CT Scan was in play and she was observed with MRIs. She disliked this scan because it made so much noise and she was sedated every time. Some people have that issue other than Patricia. What it boiled down to was 'Do I become a mother and risk the chance one day there is a moment of lapse that causes harm to our child of which I nor he could forgive ourselves for our selfishness? Hence, if the answer is no, do I stay a wife when I deprive him of a family greater than me? Hence, if the anser is no. Then what do I do?"
"The Happy Family" was never of concern. It was always within reach. "...for better or for worse..." were empty words at that point. She could see the future and she knew how far he would go to reassure her and she didn't want it. She could not come to terms with her disabilities and the 'idea' of him providing MORE to her was more than she could handle and the 'idea' another person might someday have to come to stay to help raise children was out of the question. She had always conducted her own life on her own terms. He the same. She was not about to have a third party compromise 'the will' they had together. There was no way she was to become a mother in a compromised status. She couldn't handle it.
She left.
The 'scuttlebutt about the divorce was nothing more than 'legalese' when turned over to lawyers. New Hampshire has very tough divorce laws and Patricia played 'a wifey role' in the proceedings. Her lawyer stated she was no longer able to participate in 'physical activity' as she once did and he was not willing to come to terms with it. Mr. Wonderful was a marathon runner, he never gave that up. So, what? She ran with him from time to time but they never competed together. The accusation, by the lawyer, was that she was mostly abandoned to the house, unable now to return to her former profession and when he came home after sometimes extended working hours he would run every evening with complete disregard for her needs. It was nothing more than a pack of lies and she signed her name to it. The entire family was appauled. She called our father now living in North Carolina from New Hampshire on a Friday night stating she was packing to move this weekend with the moving company coming on Monday morning. She asked Mr. Wonderful to stay away that weekend and that Monday through a 'technical' letter from an attorney and he complied. Up to that point we, as a family, knew nothing about this issue or this anticipated child. I am confident Mr. Wonderful was supported by his brother. My father dutifully went to New Hampshire to help her pack and for that participation we have yet to speak well of each other ever since.
The bottom line here is Mr. Wonderful is fine. He was devastated. He could not believe the allowable tone of the proceedings. He has since remarried in a Roman Catholic Church to a woman that share nearly every interest he does and they 'to date' do not have a dog or a child. He and I speak on occassion and it's always good to hear from him. We exchange greeting cards at least once a year around holidays. He could not be better and Patricia could not be worse. Oh, maybe she could but she ain't what she used to be even after the traumatic events surrounding 'the tumor.'
On to North Carolina and ownership by Duke
I strongly believe that 'Pride' is a male emotion exclusively. Even in lion venacular 'A Pride' is defined surrounding males. It is a group of lions of which the progeny are of the same long maned male. When a Pride is taken over by stronger, perhaps younger, more vigorous males it is the tendancy of the males to kill the young and induce the females into estrous.
When Patricia come to North Carolina it was to an apartment she selected not far from our parents home. It was lovely. Of course. As far as I was concerned it was also very empty. I never visited that much and I still don't. I stop in to say 'hello' and the like but the relationship has suffered because of it. She doesn't seem to mind, but, she doesn't seem to mind about anything much these days. In North Carolina, our father was King of the Pride. He was made Health Care Power of Attorney and Power of Attorney should the 'need' ever arise. It did. Not due to excellant care either. I'll explain. Dear Ole' Dad had his daughter back in worse condition than he gave her up and now he was going to Duke to keep her from getting worse. What that equated to was 'rubber stamping' everything Dr. Allan Friedman stated needed to be done next.
Dr. Friedman was a very busy man whom spent time traveling and lecturing around the world more than he spent time with his patients. It was his habit when he was 'in town' to round with his students on a Sunday Morning.
Patricia fell into crisis. I was getting no answers from our father. I was getting no answers from Dr. Friedman because he would never personally return phone calls, only his nurse did. I was getting no answers from anyone and Pat was no help, Mr. Wonderful always 'took care of her.' I demanded more information from the one man who had the clout, namely our father, and he didn't understand the 'hypervigilence' that had been given Patricia to date by her former spouse so he couldn't see things my way. Both, Mr. Wonderful and I were always on the same wave length, "Take control, demand answers, investigate and act accordingly." That was a capacity my generation perfected. It was a capacity my parents generation didn't feel comforable with and forgave themselves when they made "W"rong decisions because '...but, it was what I was told.'
My dad is a high school graduate and so is my mother. Their children are more educated than they are, yet due to their demand for respect 'by status' they override anything their children tell them. They don't like to be lectured to because they see their world in a less sophisticated manner. So for our father's lack of ability to 'take control through self education and investigation/networking' Patricia became 'Duke Property.' After all, Duke by reputation alone was a superior medical center so what could possibly go "W"rong?
Right?
"W"rong.
Reputation comes with a price. Every aspect of the private operations of reputation require 'it's selling points' and although medical and legal advertising is allowed these days, the price for 'clout' and private money comes from pandering. What Dr. Allan Friedman, head of the department at Duke whom has a spouse who is head of the department of neurosurgery at UNC - Chapel Hill do for a living is keep their 'practices' alive through some hands on surgery, which Dr. Friedman did operate on Patricia eventually, supervising residents and interns and lecturing far and wide regarding all the insights of Duke University and Medical Center.
Sorry, but, my sister was neglected because of Old World Southern Mind Set. It gets pretty ugly from here. Eventually, after the damage is done, she makes me Health Care Power of Attorney and her care gets moved to Baptist Medical Center and Dr. John Wilson who recently referred her to Dr. Thomas L. Ellis.
Having Patricia back 'with the family' in North Carolina being looked after by her parents gave her child status again at the age of about 38 years old or so. That time when 'child' tends to take over when an adult turns forty. No, she never got involved directly in a relationship with another man. I am sure it is not difficult to believe Patricia believes in virgin status. Okay? At this point in her life I doubt if she would remember if she was ever taken advantage of. She lives a mostly sheltered life with very few friends but there has been times with 'system issues' the question has come to my mind. There was no sense to ask her about being violated in some way.
What occurred with Patricia was instead, her surrender to the tumor. She surrendered 'the fight' to survive at the level of maintaining her self identity to others and those others didn't see her as 'the individual woman' so much as a patient who was still alive. All damage was attributed to 'the disease' and not the lack of effort to completely keep her intact; mind, body and soul. She suffered immeasurable damage at Duke.
One Sunday Morning after a craniotomy to perform shunt revision which Patricia's set back was attributed to, I came early. Very early. 5 AM early. Patricia and I watched "Sunday Morning" that day and a show on a PBS station about being a maestro. You know 'constructive baton twirling' to conduct great orchestras. It was during the 'maestro' television segment that Dr. Allan Friedman walked in to say "Good Morning, Patricia, how are we doing today?" He was not with his students. They would follow behind him by about thirty minutes. During our brief interlude I didn't give away my medical background, did introduce myself as her sister, he didn't recognize the name which I left repeatedly at his office with phone calls and asked him if he had a heavy patient load.
He responded by diverting attention to the program on PBS and suddenly I knew I hit a nerve. After a brief overview of Maestroship, he left the room and a dutiful, "Have a Good Day."
His students followed. They were lead by a man in a white overcoat, a Chief Resident to Neurosurgery at the time. He already was a surgeon of Gastroenterology and wanted to perfect his techniques to become a neurosurgeon. I never said Dr. Allan Friedman was an incompetent surgeon. Quite the contrary. He has excellant skills. Just untimely ones, so by that measure one might say there is incompetence. This 'Chief Resident' who did not introduce himself to me but had his name embroidered on his labcoat and didn't care what was on television. He spoke openly in front of me without to many details that would upset Patricia, stated she was doing well all considering and politely excused himself from the room and the rest of the students at different stages of learning and achievement, approximately a dozen of them excused themselves in the same fashion. I was reasonably impressed with him, hugged Patty "Good-Bye" for the day and went home to my investigation and telephoning.
I learned about him and called. He returned my call. He stated he remembered me that morning. It didn't take much to learn 'the truth.' He was more than willing to speak to Patricia's current circumstances. I promised him I would say nothing if we could stay off the record. I wanted my anonymity as well. It provided 'the power' in the circumstance I was seeking and it was 'the resolve' that was the goal. He agreed. I am grateful to him.
I stated to him my view of 'the deal' and he agreed. Patricia has been under 'Duke Care' now approximately a year and a half. All her records had been forwarded from Massachusetts and Ohio, there could be no doubt this patient was a bit unusual. It would not be wrong to call and speak with others regarding her care and their experience. Under Allan Friedman, Patricia had gone into incompetency and it was not the result of the shunt.
A characteristic of Patricia's tumor is a form of cystic development. In other words, the tumor manifests fluid filled cysts from time to time. The tumor, astrocytoma had grown but it also spawned several cysts that were now crowding the ventricles of her brain. Her hydrocephalis was worse because of it and those were the 'signs' we were reacting to and the signs Mr. Wonderful always reacted to. There were 'hallmarks' of personal behavior that triggered 'issues' with shunts, hence, the large number of shunt revisions between Ohio and Massachusetts. Never was it ignored. Hydrocephalis is a dangerous condition. It can herniate a brain stem. One of the issues during this episode with Duke was their 'glibness' regarding the shunt and the need to pump it from time to time.
The circumstances to obtain help for Patricia became rather dire. This time I was not going to be detered by family or friends or collegues or anyone, I wanted answer and I wanted them now. She was, at this point, chronically tremulous on the left side of her body when awake, had a PEG tube for feedings as she could not swallow, could answer yes and no questions appropriately when asked by shaking her head but could not speak. I literally broke into the emergency entrance that night when I was denied access through 'usual' methods. As I entered the hallway of the emergency rooms I began to look for her in suite after suite when I was suddenly greeted by a large male nurse asking me, "What do you think you are doing?" I simply stated, "I know what I am doing, I am just not so sure you all know what you are doing. I am here to see my sister and I won't be stopped ! Where is she !" He gave me one odd look, grabbed me by the shoulders and took me aside in a storage locker near the hallway. He stated, "Now, look, this is Duke Medical Center, we are a Level One Trauma Center and the hallway you were in is the main 'run' for the helicopters. If you simply will calm down, I'll be happy to take you to your sister."
He did. Patricia had deteriorated far too much at Duke. These nurses, residents and interns see these issues of the same patients all too frequently. I am sure I was not the first family member this desperate for answers.
When I reached her, I asked Patricia if she wanted Mr. Wonderful to come to look after her. She did. I never called him. I knew she knew the severity of the lack of care and she was also trapped. With her ability to exhibit yes and no she could help me obtain freedom for her to go some place else for care. By bringing up Mr. Wonderful as a solution I knew she would cooperate. She was completely powerless and 'Dear Old Dad' was out in the waiting room that I had left, just waiting to make the next mistake, covertly concealed as advice in decision making. I saw a phone on the wall and grabbed my 'Charge Card' to find Janet Bay. I found her but it was too early to call her office and I began to make arrangements to have Patricia flown to her when I was interrupted by the physical appearance of Dr. Friedman and a collegue. See, nurses' ain't stupid and the large male nurse that interrupted me also interceded for me and 'shook the guy up' enough to get his attention. I read them 'the riot act about Patricia', including the fact she more than likely had a cyst of which was causing her problems and that required a more delicate and lengthy surgery than 'just' a shunt revision. I told them they needed to 'get it' right this time and soon as she wasn't doing well and now they had someone who was upset enough to do anything it took come hell or high water.
Patricia was put on 'The Waiting List' for surgery that day, about seven hours later she was in the Neuro Intensive Care Unit doing better. This time, our father signed 'the correct' surgical consent explained to him it was necessary to enter the ventricles to remove additional growth of tumor as well as some cyst development. Dr. Allan Friedman, great neurosurgeon that he is, did flawless surgery and I didn't give a God Damn what other itinerary he had for that day or that moment.
She recovered a short time at Duke but made her most stunning recovery ever at Forsyth's Whitaker Rehabilitation Center under the care of their physiatrist, which was also a covert operation by me on her behalf. She went to Whitaker unable to walk, unable to talk and unable to swallow while still trembling somewhat on the left side of her body while awake. When she left four weeks later, she could speak minimally but was also using a small, simple computer that spoke for her with the touch of a button to let her wishes be known, she walking with a walker that had handbreaks because she was able to initiate her movement forward but could not stop yet, she was beginning to eat autonomously while still receiving three tube feeds a day rather than five and she was able to smile again.
Today, she is cared for by people at Baptist Medical Center who don't have rigorous promotion and sales meetings. The problem today is still 'the system' and the inability of her care givers within the family to initiate appropriate treatment for her. But, although she does not conduct her social affairs well and is resistant to any type of surgery, we are managing but it isn't easy. She really doesn't want to have this radiation treatment that Dr. Ellis is supporting and that I know will prove her longevity, she knows there is no saying no to me. Eventually and in a timely fashion she'll find herself receiving care she wishes just would go away.
One other minor detail, as if he did this so the entire world knew Patricia was an unusual case; when Dr. Wilson at Baptist/Wake Forest took on 'the case' among the first items on his agenda was presenting a global conference via the internet on large screen television with appropriate language over ride to his collegues without ever leaving Winston-Salem, North Carolina. If need be, it could have been rescheduled.
What occurred with Patricia was instead, her surrender to the tumor. She surrendered 'the fight' to survive at the level of maintaining her self identity to others and those others didn't see her as 'the individual woman' so much as a patient who was still alive. All damage was attributed to 'the disease' and not the lack of effort to completely keep her intact; mind, body and soul. She suffered immeasurable damage at Duke.
One Sunday Morning after a craniotomy to perform shunt revision which Patricia's set back was attributed to, I came early. Very early. 5 AM early. Patricia and I watched "Sunday Morning" that day and a show on a PBS station about being a maestro. You know 'constructive baton twirling' to conduct great orchestras. It was during the 'maestro' television segment that Dr. Allan Friedman walked in to say "Good Morning, Patricia, how are we doing today?" He was not with his students. They would follow behind him by about thirty minutes. During our brief interlude I didn't give away my medical background, did introduce myself as her sister, he didn't recognize the name which I left repeatedly at his office with phone calls and asked him if he had a heavy patient load.
He responded by diverting attention to the program on PBS and suddenly I knew I hit a nerve. After a brief overview of Maestroship, he left the room and a dutiful, "Have a Good Day."
His students followed. They were lead by a man in a white overcoat, a Chief Resident to Neurosurgery at the time. He already was a surgeon of Gastroenterology and wanted to perfect his techniques to become a neurosurgeon. I never said Dr. Allan Friedman was an incompetent surgeon. Quite the contrary. He has excellant skills. Just untimely ones, so by that measure one might say there is incompetence. This 'Chief Resident' who did not introduce himself to me but had his name embroidered on his labcoat and didn't care what was on television. He spoke openly in front of me without to many details that would upset Patricia, stated she was doing well all considering and politely excused himself from the room and the rest of the students at different stages of learning and achievement, approximately a dozen of them excused themselves in the same fashion. I was reasonably impressed with him, hugged Patty "Good-Bye" for the day and went home to my investigation and telephoning.
I learned about him and called. He returned my call. He stated he remembered me that morning. It didn't take much to learn 'the truth.' He was more than willing to speak to Patricia's current circumstances. I promised him I would say nothing if we could stay off the record. I wanted my anonymity as well. It provided 'the power' in the circumstance I was seeking and it was 'the resolve' that was the goal. He agreed. I am grateful to him.
I stated to him my view of 'the deal' and he agreed. Patricia has been under 'Duke Care' now approximately a year and a half. All her records had been forwarded from Massachusetts and Ohio, there could be no doubt this patient was a bit unusual. It would not be wrong to call and speak with others regarding her care and their experience. Under Allan Friedman, Patricia had gone into incompetency and it was not the result of the shunt.
A characteristic of Patricia's tumor is a form of cystic development. In other words, the tumor manifests fluid filled cysts from time to time. The tumor, astrocytoma had grown but it also spawned several cysts that were now crowding the ventricles of her brain. Her hydrocephalis was worse because of it and those were the 'signs' we were reacting to and the signs Mr. Wonderful always reacted to. There were 'hallmarks' of personal behavior that triggered 'issues' with shunts, hence, the large number of shunt revisions between Ohio and Massachusetts. Never was it ignored. Hydrocephalis is a dangerous condition. It can herniate a brain stem. One of the issues during this episode with Duke was their 'glibness' regarding the shunt and the need to pump it from time to time.
The circumstances to obtain help for Patricia became rather dire. This time I was not going to be detered by family or friends or collegues or anyone, I wanted answer and I wanted them now. She was, at this point, chronically tremulous on the left side of her body when awake, had a PEG tube for feedings as she could not swallow, could answer yes and no questions appropriately when asked by shaking her head but could not speak. I literally broke into the emergency entrance that night when I was denied access through 'usual' methods. As I entered the hallway of the emergency rooms I began to look for her in suite after suite when I was suddenly greeted by a large male nurse asking me, "What do you think you are doing?" I simply stated, "I know what I am doing, I am just not so sure you all know what you are doing. I am here to see my sister and I won't be stopped ! Where is she !" He gave me one odd look, grabbed me by the shoulders and took me aside in a storage locker near the hallway. He stated, "Now, look, this is Duke Medical Center, we are a Level One Trauma Center and the hallway you were in is the main 'run' for the helicopters. If you simply will calm down, I'll be happy to take you to your sister."
He did. Patricia had deteriorated far too much at Duke. These nurses, residents and interns see these issues of the same patients all too frequently. I am sure I was not the first family member this desperate for answers.
When I reached her, I asked Patricia if she wanted Mr. Wonderful to come to look after her. She did. I never called him. I knew she knew the severity of the lack of care and she was also trapped. With her ability to exhibit yes and no she could help me obtain freedom for her to go some place else for care. By bringing up Mr. Wonderful as a solution I knew she would cooperate. She was completely powerless and 'Dear Old Dad' was out in the waiting room that I had left, just waiting to make the next mistake, covertly concealed as advice in decision making. I saw a phone on the wall and grabbed my 'Charge Card' to find Janet Bay. I found her but it was too early to call her office and I began to make arrangements to have Patricia flown to her when I was interrupted by the physical appearance of Dr. Friedman and a collegue. See, nurses' ain't stupid and the large male nurse that interrupted me also interceded for me and 'shook the guy up' enough to get his attention. I read them 'the riot act about Patricia', including the fact she more than likely had a cyst of which was causing her problems and that required a more delicate and lengthy surgery than 'just' a shunt revision. I told them they needed to 'get it' right this time and soon as she wasn't doing well and now they had someone who was upset enough to do anything it took come hell or high water.
Patricia was put on 'The Waiting List' for surgery that day, about seven hours later she was in the Neuro Intensive Care Unit doing better. This time, our father signed 'the correct' surgical consent explained to him it was necessary to enter the ventricles to remove additional growth of tumor as well as some cyst development. Dr. Allan Friedman, great neurosurgeon that he is, did flawless surgery and I didn't give a God Damn what other itinerary he had for that day or that moment.
She recovered a short time at Duke but made her most stunning recovery ever at Forsyth's Whitaker Rehabilitation Center under the care of their physiatrist, which was also a covert operation by me on her behalf. She went to Whitaker unable to walk, unable to talk and unable to swallow while still trembling somewhat on the left side of her body while awake. When she left four weeks later, she could speak minimally but was also using a small, simple computer that spoke for her with the touch of a button to let her wishes be known, she walking with a walker that had handbreaks because she was able to initiate her movement forward but could not stop yet, she was beginning to eat autonomously while still receiving three tube feeds a day rather than five and she was able to smile again.
Today, she is cared for by people at Baptist Medical Center who don't have rigorous promotion and sales meetings. The problem today is still 'the system' and the inability of her care givers within the family to initiate appropriate treatment for her. But, although she does not conduct her social affairs well and is resistant to any type of surgery, we are managing but it isn't easy. She really doesn't want to have this radiation treatment that Dr. Ellis is supporting and that I know will prove her longevity, she knows there is no saying no to me. Eventually and in a timely fashion she'll find herself receiving care she wishes just would go away.
One other minor detail, as if he did this so the entire world knew Patricia was an unusual case; when Dr. Wilson at Baptist/Wake Forest took on 'the case' among the first items on his agenda was presenting a global conference via the internet on large screen television with appropriate language over ride to his collegues without ever leaving Winston-Salem, North Carolina. If need be, it could have been rescheduled.
"Heartbreaker" by Pat Benatar
Your love is like a tidal wave, spinning over my head
Drownin' me in your promises, better left unsaid
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a Heartbreaker
Dream Maker, Love Taker
Don't you mess around with me!
You're a Heartbreaker
Dream Maker, Love Taker
Don't you mess around - NO NO NO!
Your love has set my soul on fire, burnin' out of control
You taught me the ways of desire, now its takin' its toll
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love
TakerDon't you mess around - NO NO NO!
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Heartbreaker!
Drownin' me in your promises, better left unsaid
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a Heartbreaker
Dream Maker, Love Taker
Don't you mess around with me!
You're a Heartbreaker
Dream Maker, Love Taker
Don't you mess around - NO NO NO!
Your love has set my soul on fire, burnin' out of control
You taught me the ways of desire, now its takin' its toll
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love
TakerDon't you mess around - NO NO NO!
You're the right kind of sinner, to release my inner fantasy
The invincible winner, and you know that you were born to be
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Don't you mess around with me!
You're a HeartbreakerDream Maker, Love Taker
Heartbreaker!
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